I'd like off of the roller coaster now please.

I'm having an emotional day. I'm newly diagnosed with lupus and not on anything yet except celebrex. I've been exhausted and in pain since august not to mention dealing with facing this disease for the rest of my life. It's taking so long and will likely take longer to finally get to where I'm on the right meds and having at least a few good days.

I'm still working which isn't helping but we have kids, a mortgage, yadda yadda. I got lost on my way home from work last week. I've been trying to atleast cut my hours back some (I'm at 5 days a week) but we are short staffed and valentines day is approaching. (I'm a florist)

Plus and sorry for too much info but my monthly is about to come and it always knocks me on my butt, like 100 x the regular flare symptoms so that I'm tossing and turning in tears. And hormonal and sensitive.

And I'm looking this very moment at my Christmas tree, which is still up and do you think I can get off the couch and put it away? Yeahhhh right.

Please remind me that this too shall pass! That a clean house doesn't matter! That I will eventually manage my pain and symptoms. That my husband means it when he says in sickness and health and my children will forgive me for not being the mom anymore who baked muffins all the time.

I wouldn't wish this on my worst enemy. I hope you all are having a better day. Thanks for reading my rant.

Hi and welcome,

Sorry to hear you're feeling crappy.

Rest when you can because you will be tired almost all the time. It has been a year and a month for me since I was diagnosed. I have good days and bad days. There will be times your body will need to sleep and don't be surprised if you need to sleep anywhere from 10 to 16 hours or more.

I have gotten to where I need 12 at least before I feel halfway decent but then again you have children and a job, I don't. So get your rest when you can.

Epsom salts in a hot bath helps with pain as well as a heating pad or electric blanket.

Hang in there and gentle hugs.

Thank you for your replies, I'm getting 12 hours a night but I wake up through the night and feel like my body is on fire or I'll go to turn over in my sleep and the pain wakes me up. I'll ask about some sleep medicine. I go back to my rheumy on Feb 6th at the lupus clinic.

She didn't put me on anything besides celebrex because she wanted to do more specific blood work first. My ana was a low positive but I have 8 out of eleven of the markers.

I'm resting on my days off but it doesn't feel like I have. Getting up in the morning and working is something I'm starting to dread. The stress of that probably isn't helping. I'm probably stressing myself out too much.

I'm usually quite strong emotionally and good at keeping positive. Maybe I've hit the wall and am just overwhelmed and exhausted. I'll try counting down til my appointment. I rely on my heating pad, take nice relaxing baths and rest every chance I get but I think working so much on my feet all day and lugging buckets of water etc is really kicking my butt. By the time I get home I'm stuck on the couch with my heating pads and a complete write off. Hobbling to the bathroom is comical!

Thanks for your kind words and suggestions, it is much appreciated.

Instead of a Christmas tree this year I just put hand-made purple and white snowflakes on the window. Lifted my spirits more than anything in the world. And I haven't dusted the house in months. Thank goodness my husband keeps the house vacuumed. You can only do as much as your physical and emotional being has strength to do so. The beginning of this journey is the most difficult. You have to take care of yourself and give yourself permission to experience all of the emotions that you are having. Support and hugs are always here for you.

Laura

Joie, hang in there. Everything you are experiencing is completely normal after being diagnosed with a chronic illness. Sometimes you don't realize how much getting news like this affects you mentally. I was always very strong mentally but it crushed me when I was diagnosed. The anxiety of thinking of the rest of my life and how the Lupus and Sjogrens might affect me and my family was overwhelming and caused me to flair even more. You really should talk to your doctor about some meds for the anxiety or try yoga or meditation. I feel strongly that controlling your anxiety and stress is the biggest battle in keeping flairs at bay. It does help having someone to talk to about it that is or has been in the same situation. While waiting on getting the right meds for you, work on your mental state and try to be positive. It does get better and you learn to go on qnd not let it control your life. I was diagnosed in 2006 and I still have times that I get down, we all do but you pick yourself up and tell yourself every time you start to get anxious that it could be worse and look to the positive things in your life.
I will keep you in my thoughts and prayers, hoping that you can find some sort of inner peace!

Thanks Quiet1 and Couchtater :) It's amazing now how I can literally feel certain stressors making me flare more. I'm really trying to quiet my mind when it starts now and breathe deep. I agree that staying positive has to be our biggest challenge and the most important one. Stress is so not good for lupus!

I was in therapy before as I was emotionally abused as a child and in my first marriage so I've gained a lot of insight from that. I am feeling though that I could benefit from talking to a therapist who deals with chronic illness. Coming here also helps a lot :)

I'm taking control as much as I can through my diet, I want to be the healthiest me I can. I have 4 amazing kids and a fantastic husband that I want to be around for! I also realllllly want to be a grandma some day!

I tell myself that if I can get through being in a shelter with my children in 2007 and starting over completely with nothing then I can get through this. We all can!

My Christmas tree is still up lol. We had friends over on Saturday and I mentioned it and they hadn't even noticed until I said it. I guess it really isn't that important ;)

Depression set in with me as well even though I was basically retired and my kids were grown so I have empathy for your situation.

What was important for me was that my family understood lupus, and especially that there were times (in the first few years, ALL the time) when I had to rest. Try to remember that your health is more important than your Christmas tree, the dust on your baseboards, or anything else in your life. A year ago I talked my husband into selling our dream home in my dream neighborhood and downsizing in order to make life more simple and better for my health. When I'm tired, I rest.

It has been 8 or 9 years since my diagnosis and I'm in remission. My labs are perfect. Fibro still knocks me down, but getting back up is easier because I now know that my flares are not permanent.

Take good care of yourself both physically and emotionally. Being in a support group such as this is a big step in the right direction. It sure helped me through some dark days.