Officially diagnosed last week with UCTD with charactistics of Lupus, but not formal Lupus. Started on Plaquenil.

Just returned from a weekend camping trip at an area park run by the US Army Corps of Engineers. Park was beautiful, near my childhood home. Loved every second, wished I could have hiked.

Tricia

Hanging in there busy time getting kids back to school. My oldest is a Senior this year so lots to do .Hope I can stay somewhat healthy this year .....and loose some weight lol i start that diet every monday only to fail by wed. Sure wish I could jog:( Hope all is well --Michelle

Good to hear from you ladies! I am interested in finding out how many people are still active on this site. Lets see who else shows up!
Mary Ann

The heat is reallllly getting to me. It's so hot and humid here; it's definitely making my symptoms worse. My knees are killing me; they hurt so much going up and down the stairs and sitting up and down. My fingers hurt a lot too. I feel like my whole body is just swollen and puffy and out of order. Hasn't been a good start of the week. I hope everyone else is doing better!

-Marianne

Hi everyone! Busy summer here, son is starting 2nd year in college and first year in an apartment. Marianne - I can totally relate, the aches and swelling are much worse in the summer. My PCP ran a few tests late last week to make sure we aren't missing anything with the swelling, hoping we don't find anything :-) On a good note, it seems the dry eyes and mouth are better with the high humidity.

Take care everyone!

Amber

All here and trying to get through an Aldosterone test the Adrenal gland and operation.

I'm still around...and kinda relate to Marianne a bit. I'm sensitive to the heat...and whenever I exert myself I aggravate my symptoms. Fingers to toes hurting...and most in between. I'm trying not to give up on all this. But damn it's hard.
How do you all stay positive??

Nancy

Restorative, I love the idea of "formal Lupus.' As if it wears a three piece suit or something (though I know what you mean!) I wish it were more formal. ("I beg your pardon, would you care for your symptoms now? No? Ever so sorry, I'll leave immediately.")

Marianne03, the lower back and hip pain is bothering me, too. On Saturday, we went to a funeral, I needed the cane to get in and out of the car and for leaning on and the grave site. When I got home, I just felt like, "I don't know if I'm well enough to swim," had chills, but swam a very, very lazy and slow half mile or so anyway. (Good thing we have a small pool, I'd never make it to a health club.) I am finding that the mood symptoms are worse, but of shorter duration, and the mood swings are tracking the physical symptoms closely, though they are not identical. Depression and anxiety seem to lag a day or so behind the physical symptoms, and they FEEL very physical.

Maryanne, remember, some folks go through streaks when they post a lot, and then disappear for a while (like me!) I'm even more strict with Facebook, I actually deactivate it for months at a time-- just not good to spend too much in front of a computer. But I'll never deactivate my account at DS! If I disappear, it's usually just for a couple of weeks at most.

Amber, my dry eyes seem to be the same irrespective of humidity. Humidity makes the joint and muscle pain worse-- particularly when humidity increases. It's been up to 72% here in LA, and if it spikes up from 40% to 70%, yeah-- that's gonna be a bad day, usually.

Cat, there are periods when I just troll with no input. I think a lot of people are like that. How many people have you seen on here that just read the site for a long period without joining?
I just miss some of our old friends that we havent heard from for awhile.
I was so grateful Tiggy's spouse posted her death so we could all share how much she meant to all of us. I hope those posts helped her family.
But there are others we have never heard from again. I just hope they found the cure and are having the time of their lives. At least, that is what I want to think.
Mary Ann

Sorry, MT, I think I misinterpreted your post. I have had the same thought myself. I wonder about those folks, too... and I wish people would let us know if they are the type to wander off, or set things up so that someone will let us know if they get really sick. (My wife would definitely do this for me, and we have talked about it.)

Would love to mention this to new members, but it sounds so forbidding and scary: "Please make sure a friend or loved one lets us know if something happens to you."

And let us know how and why. Scary... but very useful information. New members probably do not realize the mortality rate for this illness is actually pretty low.

Or that's what the research says. If our experience as a group is different, yeah-- that's information we have to get out there.

I miss some of the folks we haven't heard from in a while, too.

Hey, new here. I've been in the Lupus support group for a while, but decided to join this one too as I have been dx'd with both diseases. (overlap - doc's focus on lupus). doing ok. dealing with increase in flares and depression. just chuggin' along and doing the best I can.
pat

Welcome, Pat!
Mary Ann

Hello All,
I'm one of those who is a lurker. I check the site weekly but don't write very often.

The last three months have been really good for me. The three years before we're crappy. My focus before was just getting through the day now I'm actually dealing with future things and find myself getting kind of bored.

Not sure what happen. I think I was in a three year flare! Still have symptoms ....but they are all manageable. Whereas before I had more bad days than good.

Concerns now: don't trust that a flare won't hit any minute.
Am weak from lack of exercise MUST start an exercise program
Need to lose a ton of weight
I decided I will start the exercise and diet on Monday. Can't put if off any longer. I am hoping the disease remains manageable. I have even gone off Methotrexate. Am still on Plaquenil twice a day and Aleve daily but am doing so much better.

Thank you all for this site. It means a lot to be able to go and have a place where people understand.

Terrilynne

I'm still hanging around... mostly reading and rarely posting. I don't post much because I feel like I'm being negative (which I hate!) - especially when I'm feeling like crap - which seems to be the constant lately. I hope everyone else is feeling good today.

Yes Yes
It's me your barrel of hope and happiness
It's like Christmas in August for me. I already know my gifts but it doesn't take away from the thrill. I received a new happy pill (can't you tell) I really don't know the name but it's a burgundy capsule. Zanax instead of klonapin. A BRAND New shoulder I will receive on the fifth or 12th of next month. I did lose one thing, I no longer have BOOP. But I got a new diagnosis in it's place. I sounds equally as uncool but it's mine for this month. It is........DIP.....you heard me right, I officially possibly temporarily have DIP. Desquamative interstitial pneumonia is a form of idiopathic interstitial pneumonia featuring elevated levels of macrophages.Its name is derived from the former belief that these macrophages were pneumocytes that had desquamated. It is associated with patients with a history of smoking.
Treatment with methylprednisolone has been reported. Its a form of Interstential Lung disease. weeeeeeeeeeeeehaaaa. And lastly I eiither get OBAMACARE or medicare in sept. I apologize for being greedy. But Im not sharing I hope
Much love
Merry Christmas
Robert