Been awhile since I have posted. Just came off a horrible flare in which both ankles and feet were swollen. Called the Lupus Center and we adjusted my medication. One week later the swelling finally went down. Today very nauseous and joints are very sore; no swelling...NICE! The fatigue is level 8. I have been getting sufficient rest but sometimes the fatigue is not the "lack of sleep fatigue"; just simply Lupus. You know you are not well when everyone says "are you okay? You look very pale". Of course I look pale, I am never out in the sun for fear of a rash or flare! Going to get rest tonight so I can prepare for my picnic on Sunday.

New Friends

I have made terrific friends at the ButterflyLupus.com forum. They are fantastic people all of which have Lupus. It is a wonderful forum that contains a number of interesting articles and many, many different discussion groups you can get in on. Everyone is so friendly and knowledgeable. They are not there to preach or even advise but to listen and listen they do well. I am truly comfortable there and as a result my spirit has been lifted. You can go there and talk about lupus or you can go to a section and talk about food or some other random topic. There is even a joke section! If you want to get away from it all...this is where you can go. If you want to research and learn about Lupus, this is where you need to go. This forum is so full of information. Please check it out...you won't be disappointed.

LFA - On the Road to a Cure

You need to check out this wonderful blog. I will also link this blog on my website www.SimplyStrungtogether.com as well. http://lfa-inc.blogspot.com/ This blog is full a information that is fantastic!

Isn't it wonderful that a disease like Lupus (or any other disease for that matter) can bring strangers together that we might now have otherwise met. I guess you could call that looking on the bright side of things!

At any rate, one of the topics that is listed on this blog hits to the heart of the issue...research. The topic is Lupus Foundation of America Urges Department of Defense (DoD) to Expand Medical Research on Lupus. This is one of the things I am trying to raise money for. I don't know about you...but I need a cure.
Til next blog...take care Lupus Buddies

Dealing with Lupus Today

Today I woke up extremely sore and stiff. I usually have to stretch and try to work it out. Knees and ankles were not swollen today; however joints are very, very sore. Had my coffee and slowly got my body to get used to moving. Some days are easier to accomplish this than others. My mind has a to do list put together but my body is telling me otherwise. I tried to do housework today...resting about every hour...how sad is that? You know what? I am thankful that I can do that. Today is Father's Day. I am having my step son and his family over for dinner. It will be good to see my grandchildren today as it has been awhile. Take care my Lupus buddies until the next post.

Another Great Site

I just got back from DC where I left my daughter for an internship for the summer. She is my only child...wow...how do mothers do it? Very very difficult. She graduates next Spring and she will most likely do an associates program there and go for her doctorate. I am only 4 hours away so that is definitely a plus.

While in DC I did a lot of walking and for those of you who have Lupus know how difficult that is. My legs are slightly swollen but not as bad as I thought. My joints are sore but what else is new? In the past, if I dare stay on my feet too long, I am guaranteed cantaloupes for knees! I am feeling very exhausted, part Lupus, part emotions. I am resting the rest of the afternoon for fear of heading into a flare. You have to pick and choose your battles with this disease. All said and done, I did pretty good!

I would like to share a new contact in which I will be partnering through my www.SimplyStrungTogether.com site. Please visit www.butterflylupus.com let me know what you think at ekada3004@msn.com. I think it is worth joining! Take care until the next post.

Lupus Support Group

I am co-facilitator for Westmoreland County in PA for a Lupus Support Group. If you know someone in our area, please have them contact me via email at ekada3004@msn.com for specific details. We meet every first Wednesday evening at 6:30 PM - 8:00 PM at Excella Health Westmoreland Hospital in Greensburg PA.

Our mission is to bring fellowship, understanding, research, speakers to inform us with topics such as specifics of medication, clothing that will protect our skin, what nutrition would be good for our tired, fatigued souls; and much more. We are here for YOU and we want YOU to come up with the topics that are important for you. Let's work together to help one anotherhe to acheive the best possible life. Hope to hear from you!

I have been diagnosed with Lupus for over 12 years. I went through three years of not knowing what was wrong with me as Lupus has likes to mimic so many other deceases. It was a very trying time for me and felt so out of control. Little did I know about three years later, I would find out I have Lupus. Boy did I have mixed feelings! First I was thrilled that it was not all in my head and second....what is Lupus? I ran home...pulled out a very old medical dictionary and read horrible paragraphs about my fate. Needless to say that this book was indeed very old leaving me with a very grim outlook. I knew that I had to find other resources to help me learn as much about this decease as possible...if I was going to fight this.