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Discussion Starter · #1 ·
I found out I had Lupus about 4 months ago. Iam so tired and my body hurts all the time. The rash on my face is embarasing. I clean houses for a living and some days I can barely get out of my car.My 2 boys 16 and 9 are wonerful kids but do not understand how much my body hurts. they get frustated when I say I can't go some where because I am to tired. Iam still not on any meds yet. I had an abd ultra sound and it seems I am haveing blood work done every other week. I found out I have lupus from my derm. Iwas being treated for rosia.My husband found a rash on my back so they took a biopsy and came back that I had lupus. Iam redy to start some meds so I can feel better. I know they have special clothes for people with lupus does any one know a web site ?

Thanks Jennifer
 

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Hi Jennifer,

WELCOME

I'm sorry to hear of your diagnoses. I remember when I got my diagnoses, I was happy and confused,, not knowing what to do next. The rheumatologist that diagnosed me didn't want a lupus patient,, he just had elderly. So I had to find another rheumy and i did. I have been there ever since.

My recommendation for you is to find a rheumatologist as soon as possible.. Someone who would have had you on meds 4 months ago when they confirmed you had lupus.

I'm sorry to hear how you are suffering. Some people with lupus don't have to suffer as much but the majority of us do. It is normal what you are feeling,, but you should be getting some relief from the aches and pains by now.

When I was first diagnosed people in my family didn't think much of it either. This disease is invisible. To look at me you wouldn't think i take 10 med a day everyday for lupus,, fibromyalgia and a couple of slipped disks in my back.

I just got finished vaccuming my living room and you would think i just got out of the shower from the sweating. I can only vaccuum from a chair in wheels so i don't take my back out.
Every little thing in our lives have been disrupted by this disease but we cope, So can you.
This place is very supportive,, you will find much information to educate you and your family so everyone can understand better what you are going through.

I have been here for 2 yrs. The people here are my online family. I don't go anywhere with out them.

Please feel free to stop in the chat room for a bit of one on one. I'll be there for a while just in case you need to vent.

Take care
 

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Hang in there

Hi Jennifer,

I understand what you are going through. I understand the fear and confusion that you feel too. I didn't go through my diagnosis when you did, but I now have 3 children of my own and I know what you must feel when they don't understand.

I hope you get on the right meds and things get better soon.

Lupusdude
 

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Hi Jennifer,

Welcome to the lupus site. It is nice to meet you.

Fatigue is something we all battle with. You have to learn to listen to your body. When you feel the need to lay or slow down, you should do it. Pushing yourself beyond your limit will only result in pain and fatigue.

I was treated for years for rosacea too. My second rhumey told me he thought it was the malar rash. I didn't like the rash on my face either. I have gotten use to it and I tell myself I have a nice blush on my cheeks.:wink2:

Have you been to see a rhumetoligist? Do you know the reason why they haven't started you on meds yet? I agree with Sadi, you need to find one that knows lupus. Not all rhumetoligists know about lupus.

Take care,
Lyn

 

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Hello Jennifer, Welcome here. I am not surprised you find your work difficult. I could never do it! Lupus treatments are good, but can take time to bring relief which is why it would be good to start now.
Keep in touch as often as you need. Many of us needed a lot of online support when first diagnosed.
x Lola
 

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Welcome to the forum Jennifer

A lupus diagnosis is welcome to many people who have been feeling unwell for years and suspected lupus, or it comes as a total shock to others who had no idea they had it. Either way, the time after diagnosis is very hard. The difficulties are, adjusting to the whole idea of having a chronic disease which is scary in itself, insecurity & fear for the future and the unknown, adapting life as needed, educating family and friends, waiting for medicines to work and finding the right medicines for you.

It sounds as if they are still doing tests to see what exactly is going on and maybe that's why they haven't prescribed yet. I hope they will start prescribing soon but you need to ask them about it, telling them how your working life is being affected. Doctors often just don't realise the impact on the individual life. Some of the medicines take time to work but there are lots of anti inflammatory drugs that can help with joint aches and a drug called Prednisone that can quickly reduce inflammation and usually makes life much easier

You can start finding out about how the disease is affecting you by getting copies of test results and we can help you understand them. When you know more about the disease and how it is affecting you, you will probably feel better about the whole thing, more in control and certainly be able to talk better with your doctors.
Remember that most people who post on forums are having problems with their lupus and that all those who live perfectly well with it don't visit here. Often the accounts on- line focus on serious cases that are hard to treat.

Most of us find we have to adapt our lives in some way. Getting as much rest as possible is important. So start prioritising and organising- focus on the essentials and get the children to help. I have noticed that mothers often start doing even more as if to show that the lupus isn't going to affect anybody. Both your children are old enough to make a contribution to the housework or do a bit more if they already have their chores. It won't do them any harm at all.
We do feel guilty about how their lives are affected and it is tough but it is a reality and there are far worse things than having a sick parent

I suggest you have a talk with each of them separately, the 16 yr old first then the 6 yr old and then all together. You can get ideas about all this on the Living with Lupus section of the forum.

You can get ideas and information about everything here and I think you'll find it very helpful. Everybody here understands what you are going through and there's always at least one person who has had similar experiences.

Bye for now
Clare
 

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Hi Jennifer

Welcome to the Forum. You have been given good advice so far and I hope you can start on meds soon to help get your disease under control. You mentioned special clothes for Lupus and I presume you mean sun protection clothing.

Here is a link to a well known site that specialises in this type of clothing

http://www.coolibar.com/

The clothes are a bit pricey though.

Just remember to wear high factor sun protection cream every day as the sun will excerbate your symptoms. Also cover up as much as possible from the sun by wearing long sleeve tops for example and a hat when out and about. Actually its best if possible to avoid the hottest part of the day at all but sometimes this just isnt possible.

You can also buy a product that will wash in sun protection. Here is a link to it. I cant vouch for how good it is because I havent tried it.

http://www.sunguardsunprotection.com/home.lasso

You will learn as you go along about what triggers your disease activity as everyone is a bit different.

Welcome again and I look forward to getting to know you

Take care
Joan:rose:
 

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Discussion Starter · #8 ·
Thank all so much

Ihave a dr.s appt on the 24th of this month. I'm so happy I found a place I can go and talk to people like me. All of yor responses were wonderful and thank you for the web sites I will check them out. I live eastern time every time i go to the chat room no one is on. Is there a more popular time people seem to be on?


Thabks again, Jen
 

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For chat, I've found 4pm-6pm eastern time zone tends to have people in there. If no one is in there, then it just takes one brave person to sign in and wait for someone else to come, usually someone will join you within 20 minutes or so unless it's a really odd hour of the day/night! :)
 

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I just wanted to say Hi and welcome you to the board.

I am originally from Massachusetts..............oh how I miss New England.

Anyway, I am new to Lupus and I understand your frustration. Your not alone in how you feel. This board and the folks here are so nice, so supportive and very knowledgeable too. They have provided a lot of peace of mind to me.

I think you will enjoy it here. Read and learn all you can about Lupus. Knowledge is power and I think once we understand things a little better then somehow it makes more sense.

Hope to see you in chat.:wink2:
 
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