It will have been 9 weeks from the time my primary care doctor gave me a referral to see the rhemmy, until the date of my first appointment. July 23th. Still weeks away. Currently I am still on medical leave of absence from my job. My legs are very wobbly and start to hurt if I stand more than half an hour. My brain seems to go into fuzzy mode, I forget what I am talking about a lot right in the middle of a conversation. I am still very tired most of the time, but the pain has eased up as long as I don't over do it. This God awful rash has eased up but my arms and face still have discolored skin and looks just awful. I still don't have much desire for food. Smelling food cook just makes me sick, no matter what it is. For me the worst part has been the lack of empathy and understanding from my own 2 sons and also the lack of support from my so called friends. Makes me very sad. I am so grateful I found this website and to all the members that understand about Lupus and what it does to you.
I'm also waiting for my first appointment with a Rheumatologist. It's so hard to wait. What have you learned from the blood work you've had so far? Until you start your official treatment, you can research individual test results online to maybe find something that will offer relief.
Hi Lupussucks,
I hope that one day your sons will understand. Until then - we understand now. What is they saying? Walk a mile in my shoes?? We have walked your walk, and been down that road. Some of us have gone down the road in walkers, or wheel chairs, but we understand.
Hello there, I would tell you to hang in there and keep your faith up and fresh. It’s not easy at all dealing with all the physical changes your body go through but be strong. No matter what you say or do, no one will know the type of pain you go through from a day to day basis. Lupus is such a under cover disease, that saying you have it is like saying you have a cold. I thought I was going to lose my mind every time I had/have to explain what it is, what it does, and how I hurt, people don’t understand and what they don’t understand they bypass it for something else. Hope things get better for you. Will be praying.
The lack o for empathy, is more common, than thought. People don’t understand lupus and science can’t figure it out. So we are mysteries as well. I don’t expect people to understand, I just require tolerance and kindness from my loved ones.
First appt takes months. My legs got better with prednisone. Not 100% but much better. Plaquenil 2 x day cleared up rashes. Still get malar rash when flaring, but that is the least irritating of my rashes 
Discolored skin cleared up on face after months of Obagi brand skin lightener and exfoliator. Also tritonin. Prescription from plastic surgeon office.
Now have prednisone acne 
In and out on food. Out right now.
Hang in there. You will have a lot of trials and errors with meds. It will seem like a never ending process.
Did your primary care at least start you on prednisone? That helps the pain and inflammation. Until you can get to the rheumy.
no prednisone. Just meloxicam, high dose of Vit D and plaqunil.
Nikki said:
Did your primary care at least start you on prednisone? That helps the pain and inflammation. Until you can get to the rheumy.
Welcome and sorry to hear the lack of empathy and support at least now you have us. My primary care had no idea what to give me so my rheumy was god sent so yes ask him to prescribe you prednisone and whatever else you need meanwhile you shouldn’t have to suffer or get worse because of the lack of medications best of luck and keep us updated god bless.