[smiles]

Hello Everyone,

I've just registered here so gradually having a look about and have found all the information really helpful so far so thank-you everyone.

Feeling quite scared and confused about what is in store for me health wise, I've very recently been diagnosed and I'm only just finding out how it might possibly affect me with the help of sites like these... its a massive amount to take in but i'm trying to stay positive...

 

[Katharine]

Hello there and welcome

I'm sure that you'll find there's a wealth of info here and also some very caring and supportive people.

If you are newly diagnosed try and limit the information you look for to the well known hospital sites such as the London lupus centre, the John Hopkins centre and, of course the lupus site linked to these message boards.

There is a lot of outdated and frankly scary information out there and you have to be very careful what you look at.

You will gradually learn what you need to know and your docs will, of course, be essential in that journey. I presume that you have already seen a rheumatologist (perhaps already for some time) or are seeing one very soon.

You can stay "positive" (and smiley) as with today's treatment a huge number of lupus patient go back to leading pretty much normal lives. Treatment does take time to kick in and it takes time to find the right "mix" for each person so you may need a good deal of patience but it is important to think that you will get there.

I hope that you enjoy being here and feel free to ask any questions you may have,

Katharine

 

[KarolH]

Hey Smiles,

Welcome. I was just dx last week with Lupus after being told I had MS for the last 3+years.

It is a roller coaster ride of emotions but the people here are so supportive and you really can learn a lot on this forum.

I am sorry about your dx but sure glad you found this board.

Hope to get to know you better.

Has your doctor placed you on any medications yet?

 

[applesauce]

Hi and welcome! Staying positive is the best thing you can do for yourself at this point, medications and doctors can be incredibly frustrating but they will (eventually) help you, and we're all here to support you through the process.

 

[keebler]

Hi Smiles,

Welcome to the lupus site. It is a good source for up to date information.

Please remember that lupus effects us all differently. It is a confusing chronic illness. Take it a day at time and see how lupus affects you. I alway say knowledge is power.

Don't go in the "what if" with lupus. No one can predict their health. I know that it is a hard thing not to do. I find myself doing that and have to remind myself not to go there.

It is a scarey and confusing time with being diagnosed with a chronic illness. :hug: We all go threw that.(I still get that way, confused and scared) Hang in there and please remember we are here for you.:hug:

Lyn

 

[smiles]

hello peeps

nice to meet you and thanks for your lovely messages, i'm so pleased i've found this site!

today i'm feeling much better after having a few 'dark' days, been trying to get my head round it all. i don't know how much this will affect me and as Lyn said we can't predict our future so as long as i do my best to take care of myself and be prepared, i will try to enjoy each day to the fullest while i still can.

i'm not on any meds yet and i'm not sure i need to be yet?... i have this week seen a homeopathic doctor who is hopeful she can get me better...

i haven't seen a rheumy either - my blood test for that came back fine and i haven't had any major complaints yet for pains, although this week i've had some stiffness, aches and heavyness under my arm/side of my ribs and it was a strain to even pick up my cup of tea! although today it is a little better. is that the kind of pain i should expect more of?... i also have pains, swelling and burning sensation in my leg but i think thats linked to my DVT.

i don't really know what kind of lupus i've got as my haematologist hasn't been overly informative so far - other than telling me i've got lupus which has shown up twice this year in my blood test - most of the information i've found out has been off the web! i'm going to see my GP this week and also try to see my haematologist again soon. however, i'm guessing its in my blood as i was told i had a blood disorder called lupus!

the reason they were doing tests on me in the first place is because last summer i had a blood clot in my leg (DVT) and it was somewhat of a mystery why it happened to me. a year down the line and a hundred or so tests later... here i am! it seems i am lucky perhaps that i haven't had to wait years and years for my diagnosis, although i'm starting to wonder if i have had this for years and years afterall!

alot of what i've read up makes MASSES of sense, many of the symptoms, other peoples stories etc etc. my health was always fantastic, apart from having mild glandular fever once as a teenager, up until about 4 years ago i rarely even caught colds, never been in hospital, never even broken anything! until i got glandular fever again four years ago but this time it was severe and my immune system crashed and i caught everything in town (well almost!) i spent a good six months completely wiped out and although i did return to work the same year and gradually built it up to full time, i've never felt fully recovered. i can probably count on both, possibly just one hand the number of days i've actually woken up full of energy... hmm, maybe i'm just getting old! I'm 29.

anyway, i don't want to this to turn into a rant or self pity so i'll stop here.

i am so pleased i've found this site though and its so good to know i'm not alone with what i'm going through. i have a fantastic family close to me who are very very supportive and i'm blessed to have them however its so great to find out what other sufferers are going through too, even though ideally, there wouldn't be any sufferers...