New to this and looking for direction

Hi all,

I was "recently" diagnosed with Lupus and I am totally lost.  I quote recently because in 1994 I was told I had a positive ANA but not to worry about it because it was fibro and to go see a psych.  Well fast forward to today and numerous unexplained health problems later, I was finally referred to a rheumatologist who says now I have lupus.  My ANA levels are 1:2560 and I have a low white blood count on the initial tests.  She put me on the anti-malarial plaviquil (sp?), prednisone and aleve.  I see her again in a couple of months but have no idea what is happening, what I should be doing, what will happen, things I should be looking for and so on.  I have ongoing joint pain and swelling, chest pain, fatigue and mental issues.  Meaning I have moments where I lose my ability to reason and try to figure out what is real and what is not.  It is very confusing and scary when this happens.  I have four kids 5 and under and I am freaking out that I will not see them grow up.  Any help and or advice would be greatly appreciated!!

Thanks,

Lainie

Welcome to our forum LupieLain! First let me say that at the top of our lupus forum is a resources link that many of us help write and I think you'll find it very useful. Secondly, your inability to reason is known commonly as "lupus fog" and you will find some days are much worse than others. Try not to be frightened- it's just one of the many unfortunate symptoms of lupus.

Take all your meds. If you're on psych meds (I've been on them for years) stay on them.

Be your own advocate by learning as much as you can about lupus, keeping a list of symptoms and problems to address with your rheumatologist, and if your treatment isn't going well seek another rheumatologist for a second opinion.

Lastly, get as much rest as you possibly can each day. A few years ago someone told this story: One of her young children was asked at school to draw a picture of what their mother liked to do best. He drew a pic of her lying on a bed. Teacher asked why and he said mommy likes to rest. Now the mommy found this very depressing, but to me it meant that she was taking care of herself, as she should.

This initial period you're going thru is really rough until the meds get lupus under control. Some lupies go into remission, and the majority always take meds and lead productive, fulfilling, long lives. It's really a very small percentage who die young. So, take a deep relaxing breath. I know how terrible you feel right now both physically and mentally, but in time you will feel much better.

I really hope that you will find the time to tell us how you're doing. Stop by to ask questions, reply to others, or simply to rant and vent. There's always someone here to listen. Love, Butterflake

Another great source of lupus info is lupus.com and lupus.org.

You can buy sun protective clothing at coolibar.com, sungrubbies.com, or academy sports.
They will give you some extra time in the sun along with sunscreen. How much depends on your body. Also try to avoid the sun during its zenith (11am-4pm).

I'm one who has to avoid all sources of UV rays (fluoresent, cf bulbs, tanning beds, etc). I even have to have light blocking blinds. Not everyone needs this kind of extreme protection though.

Ask your doctor to check your vitamin D levels too. It can cause pain too.

Hi LupieLain:

I wanted to welcome you to the forum too. You've been given a ton of great information. There are so many great people here, and we all understand what you're going through. You're not losing your mind and things will level out as your medications begin to work.

You'll have your hands full having four kids and two children with Special Needs, but hopefully you'll be able to get some help with them. It's VERY important that you try to limit your stress, you need plenty of rest, and you MUST LISTEN to your body. It will tell you when you're not doing well. Not listening to it can only make things worse. I hate to ask for help, and it's VERY hard for me to do, but learning our limits early on is a big deal. Knowing when to ask for help and to say NO are very important.

I'm 48 yrs old and I've had lupus for 26 years now. It took the doctors and many of them at that 13 years before they diagnosed me and began my treatment. I know you're very worried about whether you'll be around for your kids, try not to worry to much our medications can control our disease very well. Lupus patients vary from one another. Some after they get their disease under control need no medications after that, and others don't do quite as well and seem to struggle all the time.

I go out into sun very rarely as it really bothers me and I feel as if my skin is burning just sitting in the car and having the sun hit my skin thru the window. I was lucky when my daughter was little I was pretty healthy. She was quite a handful and never slept. She's almost 21 and still has insomnia really bad. We used to call her High speed, low drag. She was NEVER still and I thought most days I would lose my mind because I had only 2 hours of sleep the night before.

So I can't express it enough to you that you need plenty of rest, especially with the two special needs kids. Trying to figure out if your Rheumy is good or not, can be difficult. I normally look at, are they treating my condition, are they listening to me when I'm talking about my symptoms. Do they hear me when I say this isn't working and I'd like to try something else. Stuff like is what I look at, trust me I've been through several Rheumys. So don't feel bad if you think you need someone else. If they aren't listening to you or not treating your symptoms then it's time to seek someone else.

Please come and ask any questions you may have. There is a ton of practical experience here on this forum and someone should have an answer for you, we aren't doctors so we can't advise you. We can, however, tell you what we've experienced and what we've tried. Give it some time for you medication to kick in and start working on your lupus. Try not to get to discouraged and like I said listen to your body. It you feel you need to take a nap then that's what you need to do. If you have any family that can help you out for awhile, until you start to feel better would really be helpful.

Sometimes, when I needed sleep and my daughter wouldn't sleep, I'd sit her in my bed, turn on her favorite TV show. I'd put her favorite toys in my bed and she'd play there while I napped. Heck I'd even put a bowl with munchies on the nightstand so she wouldn't get me up for them. I learned lots of way to manage when my daughter was young. You will too, as they get older it does get easier in some ways but harder in others.

My signature is listed below and some of the stuff that my lupus causes is listed there. I'll be more than happy to answer any questions you may have. Looking forward to getting you know you better and I hope you begin to feel better REALLY SOON. Again, welcome and sorry that you have this, but things will be okay.

Hugs,
Barbara