My worst nightmare has come true

Oh you guys, my Lupus is flaring bad.  I can't believe this.  The last time I felt like this was before my diagnosis.  Really thought I wasn't ever going to experience another flare.  How naive.  My knees are swollen and sore, my shoulder too.  I feel like crap, big butterfly rash on my face, a headache that hasn't gone away in 8 days. I've been on 40+mg of pred for 10 days now and I'm still feeling like this.  I have 2 more weddings to shoot this month and then the season is over, thank goodness.  I just can't believe this.  All that weight I lost over the summer is going to pile back on from all the pred.  I'm deflated and so disappointed.  I want to cry but my sjogrens is acting up too and there just isn't any tears.  LOL.  I can't even cry!!!!!  What the heck is that all about.  I want to scream.

 

All I can do right now is shake my head and throw my hands up in the air.  Thanks for listening.

 

Ginny

Oh, man. That is a terrible disappointment, I'm so sorry that's happening to you. I'll be thinking of you. Hang in there, don't worry about moderating, take care of yourself first.

Also a reminder to all of us to do a little less than we think we can as lupus is such a bloody unpredictable disease. ARG!

So sorry, Ginny.

Ginny, so sorry you are flaring and in pain. If you can, soak in a hot bath and see if you can
get some relief. That seems to take a little edge off the pain for me when I'm flaring.

Hoping you feel better real soon!

Robin

Oh Ginny, I am so sorry ((((hugs)))). Your lupus is really flaring bad! Please take good care of yourself, you will be in my prayers!!!

(((Ginny))) I'm so sorry you are flaring like this. CAn you get shots in your joints from the rheumie to help? They also bump up your pred dose. I hope you don't have some kind of infection too, making the flare worse. It does seem odd for you to flare so bad on such a decent dose of pred. People just don't understand how crippling and sudden this disease is when it hits. I did a little work and I"m smack worn out, I mean beyond exhausted. I got stung by wasps and they now are infected from being on pred and also stillhave alot of poison in them since I just don't clear that kind of stuff very well. Just little things even make things worse.

The shots in my joints didn't hurt and helped alot. I hope that you get some headache relief. A small comfort besides a dark quiet room can be some tiger balm massged into your temples and the base of your skull. If I was there I could give you a ****su head massage, they work.

Frans hot soak sounds good, maybe some epsom salts. Its sad but everytime we think it gets bearable, something always happens. I will send good healing thoughts your way and hope you get what you need to finish up your shoots.

((((Ginny))))....so sorry you are having such a bad flare with the stress of 2 more wedding shoots on top of it, which has to be adding another whole dimension to the stress portion of the flare.  Try not to fret about the things you can't change and just concentrate on resting however and whenever and whereever you can.  Keeping you in thoughts and prayers....wish I could offer more. 

Lucy

I am glad you are improved but sorry you are flaring.

Well, two weeks of high dose prednisone has got me through this flare up.  I feel so much better.  Now I'm dealing with the lovely effects of all that pred.  I'll be tapering down tonight thank goodness!

Hey thanks Marji.  I'm allowed to taper down to 20mg tomorrow morning.  That's a big relief.  I"m just about to climb the walls.  So far the Lupus symptoms are at bay and I hope they stay there!

Hi! Ginny,

Isn't that the pisser of them all? Excuse the bad word, but that's the one I feel? That we don't even have any tears to cry? And that when we get that sick, since we don't think we could feel much sicker, ......that we must, absolutely for sure....... START FEELING BETTER??????? Please ask for as much help as you can get finishing up your work season. Hope you are already feeling much better.

sue

 Ginny ,
     I am not really sure how to do this never felt in the dark before about not knowing things. I am 34 and was diagnosed with lupas in July 2007 after I had to be brought to the hospital because my knee blew up double the size of the other. I often felt like there was something not right I would get so that after sitting for only 5 minutes that I could not stand up straight when it was time to. I gained alot of weight and then lost it again people that dont know me to long can't believe how fast I lost it but for those who know me well know I have always been tiny, well  in 18 mths I went from my normal weight of 110 (which I have always been since I was about 16) up to 165 I could'nt believe it everyone around me could'nt believe it . I have a very active job and its not like I sit around I am always doing something unless I am sleeping I often ask my doctor questions but never get straight answers, wondered if the predisone was what made me gain the weight or just the disease still not sure my doctor took me off predisone in Jan . Thats why I am here I have so many questions but not sure where to go to get the answers google is not doing it for me just brings me back to pages like this one . 



                                                                                                                                                                                             Thank you,
                                                                                                                                                                                                               pd