But you don't look sick !

Can someone please explain that statement to me. If I hear that one more time I am going to smash someone in the face.

Come on people, is there a specific way that someone is suppose to look when they have Lupus?

Is it just ignorance to a disease that people just don't know that much about?

Well, I was sick of hearing that so the next time someone said that to me I just looked at them and asked "What am I suppose to look like?"
That seems to work, they don't know how they are suppose to answer that.

The other good one is "Well,You look good".
My reply to that is, I'm glad I look better than I feel!"

GRRRRRRRRRRRRRRRR... ok done venting... thanks for listening!

Communication , depression and faith, oh my

April 3,2005


I admit, that since I have been sick, I'm just hidden beneath the pain and depression that is almost constantly pecking away at my soul on a daily basis.


To top it off I am feeling very insecure with myself. I have become someone I do not want to be which is "dependent" on someone else. I have always prided myself in being independent, always held a job worked full time and took care of my children.. and paid my bills. I took care of everyone else! Now I no longer feel like I have the strength to go to work, exhaustion is excruciating, fatigue is constant and draining. What do I do with myself if I can't work, who am I NOW?


I was in control of myself and being a typical Virgo type personality, yes I am in some ways a control freak. Of course having OCD doesn't help much either...lol
I like to know what and when things are going to happen. With Lupus, I have lost that control factor. I now have become a shell of my former self.
I don’t know who I am each day until my eyes open and I take my first steps and see what the pain level is.
Will I be able to take a shower and raise my arms up high enough to wash my hair and then style it with a blowdryer?
Will I be able to sweep the floor, do up some dishes or even walk upstairs without being out of breath and tired to the point that I just want to curl up and go to sleep?


I cry everyday. I feel trapped in a body that is foreign and unforgiving. I am scared, of the future, of the unknown.


I no longer feel secure with whom I am. Is the relationship with N strong enough, we haven't been together that long. Will I become an inconvenience to him? Will my disease become too much for him to handle and in the end make him wish that he was with someone else and not me?


Such negative thoughts, always creeping in lately! Me the ultimate believer that I can conquer all, have lost my edge in this battle.


Faith, I have lost faith in myself, and thus have lost some faith in his ability to love me. Maybe its because we dont have a long history together. Maybe its because N is not the type of man to reach out and touch my hand and say "Sue, nothing will break my love for you, or We will be together forever regardless of what life will throw at us". Sometimes I miss those words of security, love and tenderness.


Communication, that is hard for him, hard for us as a couple. We get along so well, we do not argue or fight. We have a very good comfort level together, but we do not really talk! We talk about our day, we talk about some tv show..but we don't talk about how we "feel" about things or what we believe in. The things that we all like to hear. They never get said. That in its self is sad. When do we say them, when the person is dead and we are standing over their casket? Are we supposed to go to our graves with regrets? I dont want to, I want him to know how much he means to me now while he is alive. Why should that be so hard to convey our thougts to someone we love?


Depression is gaining on me. I dont like it, not one bit. Control issue again.(laugh) Im not a "down" person, no one would ever describe me that way. Heck I am the one who always finds something positive about every situation, I always find something funny in everything. Thats what people would say about me, I think. This negative nelly , well she is foreign to me, and not very likeable to say the least. Maybe its just from the pain, lack of sleep and being so disabled for the past four months that has me depressed. I know it is honestly wearing me down. Maybe I will have to talk to the Dr. about it, maybe feeling this way is normal. Too many questions and not enough answers!


I do know that life as I knew it no longer exists. Life as N knew it no longer exists. Somehow the two of us have to find our place in this new life, one that we can both be happy with.