Another day, another seemingly wasted day

Hi all. Today I had big plans to attend my spiritual meeting, to get thngs done and make sure I did these things. However, the wolf had other plans. It seems I got up this morning, and could not function. I went back to bed and slept until late afternoon. I am tapering down on the prednisone and I guess this is the effect it is producing now. I truly hate taking it and all it does to my body. Now this, sleeping a whole day away. What a waste of a beautiful day.

In the meantime, here I am updating the day. I was proud to submit my photo and a brief message to raise awareness of lupus. A fellow lupie is doing this project and I posted it on my facebook page for others to do the same as well. Jowanna also allows family members to send a photo and how lupus affects them too. It is a worthy project!

I am having difficulty trying to get myself motivated with all the seasonal activities I need to get accomplished. I have been at the camper several times and done quite a bit but I have so much more to do yet. Add the stress of several other thngs and you get the picture.  So, in an attempt to get things done, I am going to make a list, yes, a list. I never like to make lists because it is hard for me to be realistic about things to do. I end up with a list that is astoundingly long because I get on the subject and find many more things to add. Then, in turn, I get depressed because there is no way I can get it all done. I have found if I can make things bite sized, I get more done. So, maybe a small list of essentials will suffice.

On a positive note, I have not gained any weight on the prednisone this time around. Yet. I always gain weight but so far so good. I have been munching on things like cheese, and carrots and such and it seems to be making a difference. I need to make a note of it.

On the negative side, along with prednisone comes the headaches with tapering down. It is horrible. It is worse than a migraine and induced because of the lower doses of prednsone. It is my body's way of saying, hey give me more prednisone. So, the poison gets me in another way while helping me it hurts me. Go figure. That is why we need some new meds  for this disease. I mean, come on, over 50 years is a long time to not have any new meds for this disease. The ones we use are so harmful to our bodies that it is criminal, but necessary for life.

For anyone not aware, I am in a drug trial for the new drug that is most hopeful for lupus. It is called Benlysta. It is my hope that they get it approved soon, since so many people are losing their battles lately. We need a new med or a cure!

Well, time to get to bed for now. Take care everyone!