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Hi Everyone,

I just wanted to introduce myself. I'm 37 and recently dx with Lupus. Up until this point I've felt fine. I had the butterfly rash on my face in November, alot of fatique and viola with my rash and a positive ANA they are almost sure that I have Lupus. Thankfully my other test didn't test positive that they ran on my kidneys and so forth. After reading some of the other post I've really gotten scared. But I also feel very fortunate. I'm just so scared about the unknown.

My husband is very supportive thankfully. It's really weird what I feel, somedays I don't feel like myself at all. I didn't realize what the sun does to this disease. I'm a sun sun sun person. We have a pool and live in it during the summer. I spent most of Sunday and Monday this week in it and got lots of sun. Now my hands are so swollen and tingly. So I guess based on what I've been reading on the site that the sun is a no no.

I'm also starting nursing school this fall and hope my new disease still allows me to follow that dream.. I've waited almost 15 years to return to school and then this dx comes up. I waited until my 6 year old went to school so I could too!!

Anyway, I thought I'd introduce myself to you. I look foward to getting to know everyone.

Deana :umm:
 

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Hi again Deana and welcome :),

I just wanted to say that when reading these message boards it is very important to remember that many of the poeple who post here are newly diagnosed, not yet diagnosed or the rarer, more severely affected people.

Many lupus sufferers are able to go back to pretty much normal once their treatment kicks in properly. Of course, that can sometimes take some time and medication is very individual. Some lifestyle changes may also be necessary and things like avoiding stress (or rather learning not to get stressed) and pacing yourself are very important.

It is true that the sun is definitely our enemy and is not good for you even if you are lucky enough not to be photosensitive. The sun causes inflammation in people with lupus which can trigger bouts of fatigue and joint pain but can also have more serious consequences because it increases disease activity and can start a flare.

Katharine
 

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Hi Deana,


Im 38 and have very recently been diagnosed. Am I right in understanding that you have only been ill since November? I only started getting ill in October but didnt see my GP until April as I put my ailments down to age, virus, diet etc,. For me it was complete shock to be diagnosed with a chronic disease and to start taking daily meds.

I too am an absolute sun lover, although the sun clearly doesnt love me! I am going to struggle this year not to go into the sun. I adore having a tan and love it when people comment on my golden tan.

Good luck with your training. I really hope all goes well for you and you obtain your dream.

Madwife
 

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Dear Deana, Please read up about Sun Protection, it really does make a difference. I am sorry this is going to change your usual summer plans.
Good luck with Nursing School.
x Lola
 

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hi lupus37 and welcome to the lupus site. i too have a pool in my back yard and it is very hard for me not to join my family when they go swimming and the sun is out.

it is very important for you to use sunblock when the sun is out. i try not to be in it but it is very hard since the sun is everywhere.

i enjoy being outdoors but i try to stay away from the sun as much as possible. good luck and stick around there is wonderful support on this site whenever you need it.:):)
 

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Hello Deana,

Welcome to the site...This is a wonderful site for support and there is also a ton of information here.

Just because you have lupus does not mean you can't live a productive life... With the right meds and taking care of yourself... ...Being in the sun is not a good thing though... I have a girlfriend who has had lupus for over twenty years and has had only one bad flare... She is one of the lucky ones I have to say...
Every person is affected by lupus differently...Follow your doctors advise and have a positive attitue... That is my motto...
Again a Big :welcome: to you...

Love Penny
 

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Hi Deana,

Welcome to the site.

My family and I had a sailboat so we were in the sun often. It was tough to cut back on the things we enjoy but it is far better than a flare. Through trial and error I found I can go in the sun early in the morning or evening with sunscreen, a hat and long sleeves. I don't do well in heat anyway so this is a workable compromise.

Good luck with school.

Take care,
Lazylegs
 

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Hello to everyone,

Thank you to everyone for responding. Its so scary being dx w/somthing that is so chronic and really not well understood. I love that this site has so many caring people. I'll always check this site as much as possible, hopefully over time I'll be able to offer some advice or comfort.

I went to my ra today for more blood tests. Hopefully its the same results as before and nothing has changed for the worse. Cutting back on predisone, thank goodness.

Thanks for reading, I look forward to getting to know everyone!!

Deana
 

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Hi Madwife,
Yep I just found out about lupus in February. I started having a rash on my face in November and then I had to go for a physical for school. I had them run a routine physical on me and that's when it all came about. I thought the rash was roschea, but then the bloodwork came back with a positive ANA, on the low end, but positive. I'm only 37, so I thought my life as I knew it was over, but after reading the post on this site and the lupus.org site, I feel somewhat better. I'm always available to chat if you like.
 
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