[Donut2999]

Hi,

I've been diagnosed today. I was admitted to hospital 4 weeks ago and had a 4 night stay. The docs let me out as an outpatient as they were a stumped as to what was actually wrong with me. Following blood results finally returning I was told I had Autoimmune Hepatitus and futher tests have now confirmed Lupus. I dont really know how I feel about it. I'm glad that I have a diagnosis but i think I'm in shock still! Is this normal? I was hoping that somebody maybe able to tell me a bit more about the illness, I would be grateful for any advice.

Thanks
Donut

 

[Maia]

I think how you are feeling is entirely normal! Absolutely. I'm sure even more feelings will follow including sadness and anger, etc.

There is a lot of information on the main site, and feel free to ask as many questions as you want to as you learn more about your lupus and how it affects you, and what treatment(s) they will be putting you on. It's hard to give generic advice on lupus because it can affect individuals in so many different ways, but two of the most common symptoms are joint pain and fatigue which affect nearly everybody. Lupus can affect almost any body organ, hence why it has been referred to as the disease with 1,000 faces!

Had you been ill at all before your hospitalization or was it all a complete surprise and came on very quickly? I hope you find yourself very soon on the path to feeling better by getting on the right medications for your diagnosed conditions. And lastly, a hearty welcome to the site!

 

[Donut2999]

Hi,

I have a 5 month old baby so, I thought the extreme tiredness was down to motherhood and breastfeeding! Also had aneamia and a water infection during pregnancy, again I thought they were pregnancy related. It was only when my urine went very dark in colour that i went to the docs as i thought i had another water infecton. Following liver blood tests they admitted me to hospital straight away because they were so high. Then i had 4 or so days of daily blood tests to try an work out what was wrong. At first they thought I had Hep A which worried me also as this is obviously viral. Finally they diagnosed Autoimmune Hepatitus and today Lupus.

 

[LolaLola]

Hello Donut,
Diagnosis is a difficult time, you are actually coping well. At least you have found the right place. We will all help you, there are others here who are newly diagnosed. ANy questions you have just ask! Lovely to hear you have a baby. (The hardest and most important job in the world)
x Lola

 

[lazylegs]

Welcome to the forum.

Your head will be buzzing with all sorts of emotions for some time. That is totally normal. Feel free to post any questions. You can also go to the chat room and ask questions there. The members here are very friendly and more than willing to help if they can.

Right now the best thing is to take one day at a time. Rest is important. I suggest you at least lay down when the baby is napping. I know you probably run around and try to get things done during this time, but your health is more important.

Take care,
Lazylegs

 

[onetay]

Hi Donut,
I am sorry that you are having problems right now but it is good to know what you are dealing with I think. Lupus is different for everyone, that is what makes it hard to dx. There are different kinds of lupus also. Some people have very little trouble with their lupus while others have a daily struggle just to get out of bed everyday. I have found some common factors like: fatigue that never seems to leave you, joint pain, the low grade fevers, sweats seem to be pretty common, and of course the flu like symptoms. I know what a shock it is to get this news as there is not warning as to lupus. It is not like a cold. A sniffle here and there maybe a cough, funny feeling throat, so you know you are getting the cold real soon. Lupus has it's signs but they are so much like other diseases and problems that no one can get you ready for the news, it just comes. I hope you take the time to adjust to the news and find what helps you the most as the days pass. I wish you the best and that you feel better soon. Please feel free to come and chat with us about anything on your mind at the time.

 

[cad]

Hi Donut,
I am reallay sorry for your diagnosis, but glad that altleast now you can get the right treatment.

I really feel for you as I became sick after having my son who is 20 mths now and it is arelly tough. I don't quite know how I got through those earlier minths to be honest but you just do don't you, you have to!!
I would definately agree with what others have said about trying to structure a routine with your little one that allows you to try and rest even if its not sleep but just putting your feet up and relaxing. Itst not easy atall to allow ourselves as mums to do this, I have only just allowed myself a bit of this over the last few months as my body demands it! It really is important though if you are sick to not try and carry on and on as it will take its toll.

I really hope things get sorted out for you.

Have you been put on any medication for the lupus at the moment and have you seen a rheumatologist?

Good luck with everything

Take Care

Cassie

 

[Donut2999]

Hi ll,

Sorry i didnt reply straight away, been trying to read up about SLE and learn more about it. I'm on steroids at the moment to help the inflamation of the liver and jaundice. Going back to the consultant in 2 weeks. Im hoping he's going to start lowering it. I was told that once my liver levels are back down then they will start putting my on medication for SLE. Its so much to take in!

Thanks to all of you for your replies. Its nice to know there are other people here who have the knowledge and i can talk to.

Donna x

 

[Clare.T]

Hello Donna
I'm pleased to meet you but very sorry about your diagnosis which must have been very shocking indeed. It's not surprising you are low what with one thing and another especially looking after a baby which is very demanding of well mothers. There's a whole range of very normal emotions in reaction to diagnosis, fear, anger and intense anxiety are common. Don't hesitate to let your doctors know how you are feeling - many of us take anti depressants. In fact it is reckoned that depression and anxiety can be disease symptoms as well as reactive. Some doctors believe that people with lupus often have a chemical problem to so with serotonin and the SSRI group of anti depressants can be particularly helpful. You may also have post natal hormonal influences rearing their ugly heads

You might have to consider whether you can or should continue to breastfeed depending what meds you are put on and bearing in mind the importance of rest - you have done very well for 5 months already given him the best possible start but time to look after yourself now.

This is the address of LupusUK
http://www.lupusuk.com/

We also have a new member, Mrs Wolf, who is Chair of the Herts and Beds LupusUK Group
This the link to her Profile where you can get her contact details.
http://www.thelupussite.com/forum/member.php?u=41879

I am glad you found your way here and hope you will find it very useful for information and above all emotional support. Lupus is usually a very lonely business and knowing others who understand and having a place you can share your problems makes all the difference.

There's no doubt in my mind that this is the best support forum there is!

Let us know how you get on please and Good Luck
:hug:
Clare

 

[iksyfaye]

Hi D,
I can totally relate! I was diagnosed with SLE and secondary Sjogrens on Feb. 25th...I am still having trouble "grasping" it all...I have some other illnesses, and now with this...well, just wanted to say you are not alone...
I have ordered some books on Lupus, and this site has some great info...and support...as the others have said, Lupus is different for everyone...as a matter of fact, my Rheumy called it the "great masquerader"...boy is that true!! I wish I could help you more...but as I am so new to it all, all I can say is it seems that what we are feeling is "normal"...feels kinda like the stages of grief...
Take Care,
I

 

[Sage Hen]

Hello Donna,

You have indeed been through a very difficult time. Your feelings are very normal. A lupus diagnosis takes time to digest, and a mixture of feelings is normal.

I am glad, that your drs, are on the right track with what is ailing you. Hopefully with treatment, you will begin to feel much better.

Welcome to this site and Congratulations! on the birth of your baby Donna.