I was diagnosed a year ago but am only just starting to reach out for support. I don't recommend that route. After I was diagnosed I think I tried the "if you ignore it, it will go away" approach. It didn't work. I was lucky however! Shortly after being diagnosed I got pregnant and managed to keep it (with a little help from heparin shots). My lupus went into remission for 9 months and I was blessed with my second little boy in July. I am realizing as I read thru other post how very lucky I am to have my children. I have a 2 yr old, and and almost 4 mo old. Both boys and very loveable monsters!!
After my 2nd was born Lupus came back with a vengeance! Worse than I had ever had it. Again, I am lucky. My worst symptoms have been NO energy, and pain and stiffness in my hands and wrists, ankles and feet. While those are bad (sometimes so bad I can't even lift the weight of my hand!! Let alone my little ones.), they are nothing in comparison to what others deal with.
I have not found a rheumatologist that I click with yet. I am hoping to find someone who will accept that I want to try lifestyle remedies before meds. I am extremely sensitive to medications (even Tylenol can knock me out), and I am nursing to boot. Does anyone happen to know where I can find alternative methods that aren't scary, dangerous, or just plain weird? I have been in a flare for almost 3 months now but have only been desperate enough to take prednisone one cycle.
It is comforting to know that there are others who know how I feel. Thank you! I have been called a hypochondriac my whole life (except by my mom!). That gets to you emotionally and even when there is an obvious problem I am very slow to go to a doctor because I'm so scared they will tell me it's all in my head. (Yes, I've been told that before.) I'll stop rambling. I hope to find friends here and I thank the people who put this together.
Hello Lars :lol:
welcome to our family where no one will dismiss your symptoms and everyone will understand what you are going through and how you feel. Most of us realize that we were suffering from Lupus symptoms for many years before we finally got diagnosed. Therefore, we can identify with being called hypochondriacs and being told that we were just imagining our aches and pains and being told that we needed to see a psychiatrist because there was something wrong with us, emotionally, if we felt we needed to get attention by making up so many aches and pains!
Here, you will definitely find people to talk to, get answers from, who will give you support, comfort and understanding when you need it and will be here to listen if you just want to talk!
You are right in saying that you are very lucky to have two wonderful, healthy children with this disease. You now need to find a good rheumatologist who fits with you! In the meantime, come to us with questions and concerns and we will do our very best to provide answers etc.
Be careful, when trying lifestyle remedies, to avoid a lot of herbal medications. Many herbal medications can actually aggravate Lupus symptoms and can cause us to flare-up. Otherwise, lifestyle changes are one of the most important ways that we can attempt to manage our disease. You will need to find a balance between exercise and rest because both are important. Also, avoid the sun and UV rays or hallogen lights. Keep your body covered if you must be in the sun. Learn to limit yourself so that you do not overdo and, most importantly, avoid stress!! Stress is our worst enemy as it can cause so many dysfunctions that will make us flare-up and/or make our flare-ups worse!
I am happy that you joined us and I am sure you will find friendly, kind, caring and supportive people here :lol:
Peace and Blessings
Welcome, I left you a post in the other forum, thread you posted...
Glad you found us...