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hi all

its annie here, i have just been diagnosed with lupus and i am heartbroken!!! I have posted here before and i always knew it was lupus but hearing it was so difficult. I know i must sound meladramatic but i feel like i am falling apart. MY gp has been good and he is running further tests to see what has been affected, he has also started me on plaquenil and i am waiting for gp to ring me. I have also asked to be referred to St thomas's as advised.
The hardest thing is getting through the day. At the mo i am getting minimal symptoms, ie the odd flare of vascillitis on lower legs, bit of tiredness, itching, noticed a bit of hair loss at the front of head. Everytime i get something different i am hysterical. I have a 7 month old babe who i adore and i feel so sad when i look at him. I am not dealing with this very well and keep breaking down and dont seem to be able to pull myself together.

I dont know how i am going to deal with this, please help me get through this and let me know everything is going to be ok. I have so many questions i would like to ask, ie can you prevent this from spreading to other organs, what can i expect ( i know its different for each individual). Does anyone know of any support groups in surrey or london.

thank you xxx
 

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Hi Annie,

I am sorry you have been diagnosed with lupus, but happy that you have begun treatment for it and will hopefully soon be feeling better.

No, of course you are not being melodramatic..you are acting like a normal human being! Lupus is scary so of course you have worries. When I was first diagnosed, I would cry all the time too ...most of it from misinformation and the unknown.

Knowledge is power so learn as much as you can, preferably from the information on this site since the info on the net can be outdated and scary. When you feel down or just need to talk or ask questions, the people here have such wonderful compassion and insight- and it feels good to talk with people who have gone through similar circumstances.

Get lots of rest, stay out of the sun and keep an open line of communication with your doctors. No question is too small or stupid.

I truly hope you begin to feel better soon -
Sharon
 

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Dear Annie,

It can be a shock to be dignosed even when you expected it.

One of the blessings of frequent monitoring is to detect early any organ involvement. Many people with Lupus keep extremely well.

Keep talking to us, we have all been where you are.

x Lola
 

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Hi Annie,

:hug: hugs to you. Nope, you are not being melodramatic. I'd say that's a pretty normal reaction. You have not lost your marbles yet!

The first thing is, please, please, don't panic. It's very frightening to be diagnosed with a chronic disease and it does change a few thing in life (hopefully minimally), including your way of looking at things. I haven't found that to be a negative thing. I think I appreciate things more now and take life at a slower pace.

Lupus is now far better recognised and treated than it was in the past and the outlook for patients is generally very good. Many people can go about their daily lives and forget the disease most of the time. It is not generally fatal and with good treatment life expectancy is the same as for anyone else.

You have been put on plaquenil which is, for most people, the first line of defence. It is a disease modifying drug and will reduce the freqeuncy and severity of any flares you may have. It has few or no side effects for most people but it is a drug that takes a long time to "work" (usually between 6 and 9 months) and if you are not feeling good in the meantime other drugs can be added to help you along. Treatment nowadays consists of a mix of drugs for many people. In that way the best, most adapted drugs are chosen and any side effects minimised. Often, the most difficult thing to accept with medication, is the actual need for it. I never took a thing in life before diagnosis but I do take my lupus meds as it is still a serious disease.

When reading the messages here, you need to remember that those who post here are generally the "newly diagnosed", the "not yet diagnosed" and the rarer more severly affected people. The disease is extremely diverse and you will not "get" all the symptoms that you read about.

Another, very important point, is to know that depression is actually a symptom of the disease. It is not something to be ashamed of. So, if you feel that this feeling of despair is more than just a natural reaction to diagnosis, then you must talk to your doctor about it. It can be treated and makes a huge difference to your life. Of course, you may just need time to get over this, that's OK, it's normal. Be kind to yourself.

The plaquenil should quite quickly help with symptoms like hair loss and little things like that can make you feel so much better.

Feel free to ask any questions you have. If you feel you need to talk there is a great chat room here and if no-one is there, just go in and someone should come along and join you. The busiest times seem to be early in the morning UK time or late evening. You'll see that it's a great place to go and we have a lot of fun there as well as supporting each other through the little trials and tribulations of the disease.

bye for now,
Katharine
 

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Hi Annie

I had that shock yesterday and even when I was expecting it IS a jolt. The others have given wise advice and I can only agree that knowledge is vital. Lots on this site do keep well most of the time. Gone are the days of doom and gloom that lots of older references refer to. Modern treatments have come a long way in managing the disease and I am taking comfort that when I get my treatment I WILL (and I am staying positive about this) start to feel better.

It is natural to feel weepy and shocked. Don't beat yourself up about it. It is natural grief - loss of a "normal" health - and a mixture of relief that finally you have a diagnosis.

Now that we know what we have we can focus on "the beast" and overcome it.

Sending you big hugs :hug: and lots of cyber choccies.

Lots of love

Judi xx
 

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Hi Annie,

I so know how you feel. When I was told I had Lupus, it was almost slipped into the conversation casually and I wanted to scream, this is so scarey!! After that I sort of buried my head in the sand and although I was weary and in pain I pretended all was ok. Which for a lot of the time it is!

There is loads of help and support out there, especially this site. So, keep in touch, ask questions. You are not alone. It really helps to talk.

You have a beautiful baby who must bring you great joy, such a lot to look forward to.

With love,

Frances X
 

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hang in there

Hi Annie
I am still undx and still trying to look for answers. I understand how scary it can be. This place is very nice to come to & find comfort and hear stories from what others are or were going thru. I have a 7 month old myself. As hard as it is you need to be strong for him/her. If you ever feel down and need to talk please come here. We are happy to listen! :)
 

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Hi Annie,

Getting diagnosed is both a relief and a shock. It will take time for you to come to terms with it all. So far you have been dealing with it and that will not change. You are just on an emotional rollercoaster right now.

Dealing with Lupus is a matter of trial and error. It holds true for both medication and activity levels. Both can change also. The key is to listen to your body. When you feel tired, rest. If you ignore the warning signs you may find yourself in a flare. All of this will take time for you to figure out.

We all tend to worry about how the disease will affect our children. You may not be out kicking soccer balls with your child but you will compensate in other ways.

Take care,
Lazylegs
 

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Just wanted to say hello!

I'm on that rollercoaster of emotions - I was finally diagnosed in Dec 2007. It would be a great help if you get your referral to St.Thom's., as we all need to have face to face reassurance and explanation about the disease and stage that we are at with it!

I live in Surrey, not to far from Guildford and have not heard of any local support groups. Feel free to mail me if you want, I would use the Chat Room if I could but my computer does not let me! I have four boys 9 years and under and find it very difficult to get through the day sometimes, but their smiles and giggles always seem to irradicate my sad feelings, so far!

Love and hugs!

Lesley
 

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Being told I had it really hit me like a ton of bricks. I was **not** expecting it. I cried in my car after leaving the office and wondered if I was safe to drive home. I was pretty much a wreck for a week but then I started pulling it together. It has to be more difficult with a young baby at home; I've been diagnosed for over 6 years now and have a 3 year old daughter and you really do worry a bit more about your health when you have children I've noticed. You want to make sure you're there for them.

The good news is that you are starting Plaquenil. This is a very important medication with many beneficial intended effects, and many beneficial side effects (& very few annoying side effects which if they happen are quite short lived!). People with lupus on this medication live longer and and healthier lives - in fact the vast majority of people with lupus can expect to live a normal life span.

Gotta run - dear daughter just got up from nap! :) Take care and welcome ;)
 

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Hello, Re local support groups have you thought about joining the charity Lupus UK http://www.lupusuk.com/index.asp
Joining them has been a great help to me and they have regional groups all over uk (for list of areas see http://www.lupusuk.com/councilandgroups.asp).

I got an automatic invite to my local regional group when I first joined lupus UK. I think it depends on how active your regional group is, but my local group (the West Midlands Lupus Group (WMLG) raises lots of money towards national funds and we even have our own web site & a "Lupie News" magazine. Our group has a monthly "drop-in" centre at one of the local hospitals, annual general meetings, and local contacts so it provides a good way to meet others with lupus get support etc.

Good luck with becoming "as well as you can be" and in coming to terms with the diagnosis. I found that educating myself by using info to be found on both the Lupus UK site and "The Lupus Site" link to these message boards (see at top of page) was really helpful
 

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:worried: :blush: I was expecting a diagnosis of SLE, so it was sort of a relief but yet I spent this morning crying because of the loss of health, having to give my pup up, lack of support from my father, and I think I am in the beginning of a flare which I have to call the doctor about. It seems to me that there is more support in the UK than here in the US, most of the people I know have been ok, but not all that understanding. Disappointment, but here I think you will find answers, support and ideas on how to cope. Take Care and know that you are not going crazy the whole acceptance thing is a process, sometimes a rollercoaster ride at that. Welcome and take care, Karly
 

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Hi Annie,

The best advise I can give you is that knowledge is power. The more you can learn about how the Lupus afects you as an individual, the easier it gets to 'manage' it.

I understand that it's scary but remember - it's not the end of the world, you just need to make a few 'tweaks'. I would recommend keeping a diary of how you feel each day and what you have been doing or eating to see if you can pinpoint any specific triggers.

In the early days I did this and found that sleep plays a huge part in my Lupus and how I feel. As a result I now able to manage it to suit my lifestyle: I work full time (just down the road from you in Godalming,funnily enough) and I also go to college in the evenings.

You have to learn to listen to your body, although I admit it's probably going to be tough with a little one to look after, but you can do anything you put your mind to - don't let your diagnosis beat you down, use it to empower yourself.

Chin up ;)

AmandaB
 

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Discussion Starter #14
hi lesley

thanks for your reply to my posting, following my new diagnosis of lupus. I am coping with things but as im sure you know, have my up and down days. I still have so many questions and i am not completely clued up on this disease but i would love to chat to you further as you are local to me.

many thanks

hugs annie
 

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Take a look at me!!!! ;-)

Hi fellow Lupo!

I've been registered on this site for some years now and never really had the need to post a reply, just a quiet observer I guess.

Having read your message I sincerely relate to your plight especially when there is chilldren involved, I should kinow I have three. I'll come on to that a little later!

First things first, don't panic! It seems as thought you're in the early stages of the disease and certainly the sooner you are diagnosed the better. S.L.E really needs to coaxed out you know and certainly in my case it was months maybe even years before a definate diagnosis was obtained.

Anyway, I have S.L.E, one of the more complicated forms of the disease as it involves some organs which may lead to impariment of some form. In my case it's the Kidneys. :eek:

I have been living with the disease for some six years now and happy to report that developments in medication and research have helped me remain in remission for over 4 years with no relapses! Unfortunately for me, I have renal impairment and lost 50% of my kidney function. Day to day no real great shakes, just look a bit bulgier than I used too and get a little tired easier towards the end of the day. Ironically, during my course of treatment the doctors said I had more chance of winning the lottery than having any more chilldren - I've had two more since!!!:rotfl:

Happy to answer any questions and certainly relate to your plight. You need to think positively and ensure undertake regular consulation with your Doctor and avoid an ugly diet!

Hope to hear from you soon. Chris :)
 

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:) Hi Annie, and a very warm welcome to this site. It sure looks like you are in good hands. The Plaquinel slows down
the progress of the disease. And as for feeling scared, I couldn't accept the fact that I had Lupus for over a year. But there are two things that you have to remember;1=the sun is your enemy, and 2=stress=pain, so try not to let things upset you. You need to learn to pace yourself, that decreases the spells of pain also. And Lupus is a cronic disease, and whenever you have a chronic disease you will have depression, it goes hand-in-hand, so I would ask to be put on a antidepressant soon. We are all here to help and support everyone on this board. There is no question that you cannot ask. If you just need a shoulder to cry on, just PM my name, and we can talk it out. Be well.:wink2:
 
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