Lupus?

[SandyRN]

Well...this is not a good day for me. I've been to the doctor because I've had weird rashes, extreme itchy skin, more aches and pains than even what I normally have, oral and nasal lesions that are very painful (especially the ones up in my sinuses), night sweats, sensitivity to heat and the sun, on and on, and he's convinced I've been misdiagnosed this whole time and have Lupus. He took a bunch of blood from me today, wants to do a head CT because of the extreme sinus problems, and told me to call ASAP if any other sx show up.

I've been soooooooooo busy...oldest graduated, tons of family was in town....youngest is now at camp, and I've been hanging out with my daughter trying to give her my time in between taking her to swim practice and horseback lessons.

I'm terrible about keeping up with the board....and I'm sorry....but this time I'm more than frightened...but then again, it might make sense of all these crazy symptoms!

I miss you guys!

Sandy

[Babs RN]

Sandy,
I've been wondering how you were. Lindsey and I are in the condo now.

Hugs,
Barb:smile tee

[Marcie920]

Hi Sandy, I am sorry for what you been going through.

[creatingkarma]

(((((Sandy))))) Sometimes not knowing is the worst part. I hope you get some answers for all of your symptoms. Congrats on all the accomplishments & don't feel bad about having a life beyond the ICN. I hope things are going better for you & I often wonder how your daughter is doing. :grouphug:

[ihurttoo]

Hi Sandy! I am so sorry to hear your news. I have Lupus too. I know it is scary to hear, but you must remember that you are actually healthier today than you were yesterday. Yes, that's right, HEALTHIER!! The reason is you now know what it is you are dealing with, and you can take the meds that will make you better, where before they knew, you werent even fighting it! There are lots more meds now than there have been before. I still have IC, but amazingly, my IC actually goes into remission while I am on the Prednisone. But, of course the Prednisone is so hard on my body, I only can take it when I am in an actual Lupus flare. I have been d/xed with Lupus for several years, but I have only had 2 actual flare-ups. My flares were what you are experiancing now. I am very attuned to the feeling now, and when I feel it coming on, I head straight to the dr and they do blood work, and I am always right. They put me on it, and then I am okay. I do have to go to my Rhematologist once a month for blood work, and then if I am feeling bad, and go to my reg dr, he does blood work to check my anti-nuclear antibodies, to see if it is Lupus related.

I know you are scared, but it really isnt nearly as bad as you think. The IC is much worse for me. (Although not as serious, but much more problematic in my daily life.) I hope that you will be feeling better soon. If I can help you with anything at all, please let me know. Hugs, Amy

There is one upside to Lupus, and that is that when I was sick before, nobody took it serious, drs included. I mean no one has ever heard of IC and no one thinks it is a big deal. But, when you say Lupus, drs listen, and family and friends listen. They all take everything very seriously now. So if there is one upside, that is it.

[SharonA]

Hi Sandy...I've been missing you. :kissing:

[ICNDonna]

Some marvelous strides have been made in the treatment of lupus. Thirty years ago it was extremely serious. Now, with treatment, lupus patients can lead a normal life. I have a friend who works full time and is very active and her lupus was diagnosed about 15 years ago.

Warm healing thoughts headed your way,
Donna

[Katrina]

:grouphug: :grouphug::pray: I am so very sorry Sandy!!!!:kiss

[SandyRN]

I cant tell you how good it feels to come on here after being absent so much and find that I'm still able to come to y'all when things are hard. Unfoirtunately, the IC is still raring it's nasty head but all things considered, it's not at the absoulte front of my mind right now like it usually is. Thats been replaced with the incessant itching and joint aches and pains. I've had pain for years and years, but recently it's gotten so bad that I just dont do much of ANYTHING except sleep, lay down, and go out only when I have to.

I had a nice time at my son's graduation, all of my family and my ex's family got along great. Have some wonderful pictures of my handsome son that I'll post on my webshots page when I've got the energy to sit here longer.

My daughter is doing a bit better....she's taking trazadone at night to help regulate her sleep and I've seen her basically come back as the girl I've always known. She's friendly again, she WANTS to hang out with her family more now, and she talks at the dinner table, etc. It's so nice to have her back.

My lil guy is at camp, and THAT was quite a trauma for me. Leaving him there with 6 other 11 year old boys that he didnt know, (well, he knew his cousin who is rooming with him) was really hard for me. Now it's even harder because they don't allow phone calls there unless it's an emergency, and I'm anxiously waiting a letter from the little guy. He's at Camp Thunderbird, only about 30 minutes from here, but he might as well be in Canada! LOL I behaved and didnt cry when we dropped him off, and didnt even tell him I missed him in my letter! Soooo, I guess I'm handling it ok.

Tom has surgery July 11th and the calvary is coming to stay with me at the hospital...his brother, sister in law and daughter are going to keep me company because I will go nuts waiting alone in that huge, barren room they make you wait in. I'm worried about him and I'm worried about how I'll do physically trying to take care of him. I really dont feel well now, and I dont have that responsibility...how am I going to make this work?!?!?

At any rate, thats a summary of my life lately, and where I've been. I think about you guys every day and if only I could summon the energy to turn the computer on I might show up here a bit more.

Hopefully we'll get a handle on the Lupus thing and I'll get my life straightened out. One good thing, I DID lose some weight....I lost about 25 lbs since my last dr. visit a few months ago. Lost it kind of fast, but right now I'll take it almost any way I can get it. I can fit into my old jeans again!! :woohoo:

Hugs to everyone and thanks so much for the encouragement!!

Sandy

[poetgirl]

Sandy,

I'm sorry you're going through all that -- your life sounds very stressful these days (which is no doubt contributing to your symptoms too.) I know it's not fun to think about being diagnosed with yet another chronic illness, but as Donna and others have said, there are ways to keep Lupus in check pretty well most of the time, if that is what you indeed have. I know you've got a lot going on (especially with Tom's upcoming surgery) but try to rest as much as you can in order to give your body a break.

I am glad to hear your daughter is doing so much better. I'm sure that's an immense relief to you.

Lots of hugs and prayers to you! :grouphug: :pray:

[SandyRN]

Thanks poetgirl...you've always got something nice to say to me when I need to hear it the most.

Hugs :)

[Katrina]

Sandy, you are ammazing seeing something possitive in the mist of everything. You are a true leader! :grouphug:

[SandyRN]

What a nice thing to say Katrina...you made me :smile tee: