View Full Version : Just diagnosed 20 days ago...
Hi.. yes i was just diagnosed on June 7th - possibly one of the worst days of my life! I hate this disease! i have many concerns:
i havent been to work - i just applied for disablity
i have this fear of the sun now! i wear a HAT everywhere i go!
i cant ever go to the beach let alone swimming right?
its my nephews birthday this weekend - he's having a little part AT THE PARK!
my boyfrenz birthday is next week - he wants to go to Vegas! i cant even do THAT!
My JOINTS - omg i can hardly WALK let alone TYPE right now!
I'm tired like every 2 hours - but sometimes i only sleep 6!
I have to go to the bathroom like every hour... i wake up like at 3 of 4 in the morning to go Pee!
06-27-2006, 01:37 PM
I am so sorry you are going through this. It really does suck lemons most days. :(
Buy some cute hats that you like. If you don't like them, you won't wear them trust me. They have all kinds now. :) Get a good sunscreen. My dr recommended the Neutrogena with helioplex. It works good for me. Get a coverup. Something light but gives good coverage. Umbrella probably won't hurt but then go have fun at the park. Most of them here, not sure about CA :lol: have trees so you won't have to be in the direct sun.
My point is, if you are feeling up to it, there are ways to get around the sun and still have a life. You don't have to avoid your favorite things, just a different way to do them. We just got back from South FL where the great grandparents have a pool. I waited til the sun went down to swim. BUT in the mornings when my son just couldn't stand it anymore I put on a long sleeve shirt and a big hat, sunscreen and jumped in. And it felt soooo good on my joints actually to be weightless. I wish we had indoor pools here.
I know nothing about disability cause I am too stubborn to even look into it but I am sure there are others that can give you advice on that. ;)
I know lupus really stinks, but it is possible to have a fun-filled life in between (or despite) the bad days. Just remember to rest when you need to.
06-27-2006, 01:53 PM
I got a really pretty parisol (sp?) from the Renaissance Fest. last year and use it all the time when I am going to be outside for long periods of time... And I always make sure I have water!!!! I also wear long sleeve shirts and long pants... But, I'm kinda weird...
I know what you mean about living in the bathroom!!
Sorry you are going through all of this!! It sucks... But this is a great board to vent and learn from! Don't be afraid to ask questions!!! We're all here to help!!! :):):)
06-27-2006, 06:29 PM
I have read that only about 50% of lupus patients develop sun sensitivity, so it's possible you won't be one of them.
I was diagnosed in April. I started feeling that I was getting sunburned easily, so I have started using more sunscreen, and not staying out in direct sun if there is an option - but I spent Sunday kayaking on a bright sunny day (with a ball cap) take it slowly and find out what your own level of tolerance is.
I know this disease totally sucks, but we are not going to let it ruin our lives!
Hang in there!
06-27-2006, 08:35 PM
I don't always get rashes in the sun or go into a huge flare or anything ,but it drains me... And even if you are one of the 50% that isn't, I wouldn't risk it... But, that also doesn't mean that you CAN'T go outside!!! You just have to be a little more careful! They have this spray on sunblock spf 50... I LOVE IT!
You don't have to completely give up on life when you have Lupus, you just have to find your balance... A lot of trial and error, but you'll get the hang of it!! I promise!! :):)
And we're here to help the best that we can!
06-28-2006, 10:18 AM
I heard a story on NPR radio about new sunscreens and the recommended the Neutregena with Helioplex. I bought a tube today - it is SFP 55 and about $11.00 a tube ( :shock: ) but a little bit goes a long way.
I have just added applying sunscreen to my morning routine, and carry a tube in my purse for "touch ups." Not a huge deal, and it seems to help with the burning and prickling feelings I was getting.
Where in the world can i get this Neutregena with Helioplex? it sounds good! Or what about that Spray on Sunscreen stuff??
06-28-2006, 12:40 PM
I found the Neutregena (sp??) in my local grocery store on display with all the other sun screens. I was suprised it was so easy! I was planning on looking at RiteAid or Wallgreens, they would probably have it too.
06-29-2006, 08:40 AM
I got mine at Target, and have seen it at Walmart. I think it probably can be found just about anywhere they sell sunscreen these days :)
07-18-2006, 07:42 AM
I am new to this message board. I have been dealing with my lupus symptoms for 3 years with no official diagnosis. My first and only test was July 2003 and my next test is this month..July 26th. I am nervous and anxious. I have just been sort of dealing with the symptoms...I moved 2 years ago (400 miles from home) so I lost the original dr who tested me. I know this is stupid, but I never mentioned it to my new dr. I guess since the first dr attibuted my symptoms to Fifths disease, I didn't want to sound like a hypochondriac (sp) to the new guy. Why should I care what he thinks? I don't know, but I did. My appt on the 26th is with the Rhume. I think I will be frustrated if the dr gives me a neg diagnosis. I don't want to have lupus, but I want some answers and some help. I want some relief! It is possible to feel better, Im sure of it!
Anyway, I hope you are feeling better. My experience with the sun over the past few years (med free) is just to avoid direct sun light and wear sun screen. At first I was terrified of going out...I was like a vampire! :D But over time I became more determined to live my life. I have suffered a few times because of it, but I refuse to sit inside until dark. It is strange, but there are times when the sun doesn't bother me at all. I went to the beach twice this summer and just made sure I covered up and stayed under the umbrella when I wasn't in the water. Other time, I could be on the playground with the kids and this feeling comes over me.I start noticing that I am more sensitive and that I will be sick if I don't get out of the sun. Usually, if it gets to this point with me, it is too late. I will be sick the next day or so...maybe for one day, maybe for three or four.
Anyway, I didn't mean to write so much about myself.... I was really curious as to how you are feeling. This site has been so comforting to me. It is a relief to talk to and hear from REAL people who are experiencing the same thing I am.
07-19-2006, 05:08 AM
:( I too have just been diagnosed after only 6 months of going to the Rheumotologist. He kept telling me I had an undetermined connective tissue desease. My husband, although, trying to be supportive, just thought I was a hypocondriac! Well Last month, I ended in the hospital with tamponade and they had to do emergency heart surgery. My husband believes me now! They also told me that now I should consider I have Lupus. Although I am tired I am better from the surgery and actually just came home from Alaska!! What is all of this about the sun? My doctor said not to be in the sun too much because I am on a steroid. But I am really just going about my business as usual (or as much as usual as I can). I haven't had any skin reactions but I am olived skinned and the sun has never bothered me although I seem to have to wear sun glasses all of the time now. Anyone have any answers?
07-19-2006, 06:13 AM
For me, the sun is almost toxic at times. If I am in direct sulight very long (sometimes not long at all), I start to feel REALLY tired. Then, within the next couple of days, I will come down with flu like symptoms...extreme fatigue, fever, achey joints...pretty much misery for up to 3 days. I end up missing work, I can't clean the house or help with the kids. I just sleep and wait to feel better. Then, it just goes away. I mean, I am always fatigued and I always have sore joints, but not to the degree I have after sun exposure. Sun sensitivity is one of the big symptoms of lupus, but I don't think you have to have it in order to be diagnosed. Hopefully you don't have it...that will be one hurdle you won't have to jump! :wink: