I was diagnosed with Lupus today. I got sick aboutfour weeks ago with severe body pain. Muscle and joints very painful and swollen. The pain quickly progressed to debilitating. I couldnt walk at times from the pain. Opening a water bottle was impossible.I went in last week and they took almost all of my blood(okay only four vials but it sure felt like alot). The doctor put me on Celebrex. I have diabetes also and cannot be on steriods or my blood sugars will go even more out of wack thaen they already are.
I am feeling very weepy and teary eyed. I am 46 years old, am married and have ten children, six who are still at home. Am I going to be able to live a normal life? :cry:
First, let me welcome you to our family!
In order to have a relatively normal life, we have had to make some serious lifestyle changes, obtain a good rheumatologist, avoid stress and take our medications diligently!
One important lifestyle change is avoiding sun exposure (or exposure to UV rays). This means that most of us slather on sunscreen (SPF 35 or above) in the summer AND in the winter! Then, we wear clothing that pretty much keeps us covered and protected from the sun (some of us even wear clothing with UV sunblock in the fabric). I tint the windows in my car, wear sunglasses ALL OF THE TIME!.
Another important lifestyle change is getting recuperative rest. This usually means that we have to totally change our priorities and re-schedule our tasks so that we can take some time, every single day, to let our bodies rest. Fatigue is a very big part of Lupus and if we do not get enough rest, the fatigue will undoubtedly affect our lives in a negative way.
Yet, another important lifestyle change: Eat a healthy diet. Keep your body fed with nutritional foods. Be very careful about herbal supplements or medications. Many herbs can actually aggravate our Lupus and cause us to flare-up.
Also, exercise regularly. Find a good non-jarring aerobic exercise program and do it faithfully. Regular exercise actually helps to combat fatigue (not to mention the good work it does to help our immune system get back in balance!).
Most important - learn about your illness, learn about the medications and what they do and what their side-effects are. Listen to you body and pay attention to it. Keep track of your symptoms (when you have them and how they felt). MY BIGGEST SUGGESTION: Be your own advocate for your health care. Do not let any doctor tell you that your symptoms are not real, that it is all in your head or that there is nothing that they can do for your particular symptom. Go to your appointments educated about Lupus and how it affects you. Participate in your health plan and question anything that you do not understand (and demand answers)!
Remember, you can always come to us for questions, we will do everything that we can to provide answers. Also, you can come to us for information, for support, for comfort or if you just need to vent! We are here for you!
Peace and Blessings
Those are the basic things you can do to help yourself to get back to some kind of normal life. I'm sure that others will pop in and give you more suggestions.
cry all you want but definitely do not stop fighting. a good cry really helps you know.
but after crying, research and plan! research about lupus. good thing you end up in this forum. and also know your body. you have to gauge your limitations. now that you have lupus, its not the same anymore. you need to schedule to make sure you rest every now and then. find also a good rheuma.
and remember you are not alone. god is always on your side. keep the faith! i am a mom too! and i also have lupus for six years now. and life is great.
i now consider my lupus as god's way of telling me to stop and smell the flowers
you are in my prayers
Thank you for the warm welcome. :)