Main » January 2006

January 30, 2006

Just call me Cleopatra-I am the queen of Denial :)

If you have read through my blog before, then you know there are times when I have accepted (sure) my lupus and other times when I have been shocked that it is here. Ever notice how your mind plays tricks on you? I had been feeling almost normal for a little while and that is not good for someone as prone to denial as I am.

I have a fever again and swollen joints and hurting, and headache and yadda yadda yadda. My husband looked at me and he said-I guess you really do have lupus. At first I was offended then I looked at him and started to cry and said yeah I guess so. I guess after a few months with no real problems other than going blind for a few days-I assumed maybe they were wrong and I was really alright. This sucks...........I have a life and I want to LIVE it. The worst part for me is the mind games I play with myself though. "Oh I am fine, just tired"-that is my favorite one apparently because I use it all the time. I wonder what other mind games we play with ourselves to just pretend to be normal? What is normal? I can feel I am getting depressed all over again as if I was just diagnosed-WHY? I have known for over a year now!! God Lisa-get over it-others have it a lot worse than I do!! Why can I not stop feeling sorry for me? I wish I could just blow it off and not dwell on it but it is so hard when you wake up feeling like you have been hit by a truck while you were sleeping and it does not get any better over the course of the day.

Last night I went to bed at 7-at 8:30 I woke up to my husband wiping me down with alcohol-my fever shot up again and I was too weak to even notice-but he had come to check on me and felt it-this is CRAZY! I just want my life back the way it was before lupus invaded!

Posted by Lisa at 1:56 AM | Comments (1)

January 26, 2006

Too little sleep-too much pain

Stress=pain with lupus-that is drilled into your head when you have lupus. Over and over again you hear the same thing-STRESS=PAIN. Do not get stressed out, relax relax relax. The problem is no one ever tells you how to do that. How do you relax when you are in debt, overworked, exhausted, and do not see a bright spot anywhere? Maybe I will learn how to do that but right now I do not know how it is done and more important-no one has told me how to do it :)

I have not slept more that 4 hours a night all week-I am tired, stressed, hurting, and did I mention HURTING? This is awful. Some days I get so depressed over the way I feel that I wonder why I even bother getting out of bed. I used to be the mom who had everyone over and played HARD with all the kids-mine and everyone elses. My friends always wondered where I got the energy to play with the kids, keep my house like a museum, cook, work, study and now I do not have the energy to simply get through the day at work. I WANT MY LIFE BACK!!! If I sound angry today it is because I am. My kids deserve a mother who is not tired all the time!! I do not know how to deal with the lack of energy part of dealing with life with lupus. You would think by now I would have it all figured out but I don't. All I know for sure is IT SUCKS!!

If you have any tips that you think would help please feel free to leave me a comment and let me know-thanks :)

And remember in the words of Martin Luther King Jr.- "Our lives begin to end the day we become silent about things that matter."
Have a great day everyone :)

Posted by Lisa at 2:05 AM | Comments (1)

January 25, 2006

Coping

I got a raise and a promotion at work last week.........it was a wonderful feeling knowing that my boss has that much confidence in me and in my abilities. The euphoria from that kept me going all week last week-now reality has hit. With the promotion comes a lot more responsibility which is fine-but I am so tired and I am so afraid that I am not going to succeed. In my LBL (life before lupus) I was never worried about that-I knew I worked hard and I knew what I was capable of-now though-it seems the harder I try the more mistakes I make. I do not want my boss to think he made a mistake by placing so much faith in me. My boss now is nothing like my boss up north. He is so calm and kind and just a WONDERFUL person. My immediate supervisor is wonderful as well and I think she is also becoming a friend of mine. I adore her as well........it could be worse........I could not stand the people I worked for up north as far as the way they treated employees and acted like we should be grateful to have the job-it goes both ways-yes I am happy to have a job but they should be happy also to have people working for them making them money.
Anyway-went to pick up my prescriptions from the pharmacy and one of the scripts they wrote for me was for prevacid for the ulcers-the insurance would not pay for it-said I was TOO YOUNG LMAO-too young for ulcers?! I can not believe it!! That is crazy!! Now I have to call the insurance company and see what the age is for ulcers!! And if I am too young for them now will they pay for other treatment to heal them?

Crazy crazy crazy..................
People with lupus have enough problems we do not need the added stress of insurance companies telling us we are too young or not sick enough for certain things-my gosh-how does an insurance company know things that the doctor does not know?

Posted by Lisa at 1:43 AM

January 24, 2006

Living La Vida Lupus in Paradise

Hi! It has been awhile.............I do not even know where to start so much has been going on in my life lately. I think I should start with yesterday-I spent ALL day at the hospital here in Naples. Turns out I have two gastric ulcers and have to go see a doctor for them.....ugh. The week before last-I had pink-eye in both eyes and could not see for two days and found out that there is another lesion on the retina of my right eye-this makes seven lesions on that retina.

The good news in my life lately-I got a raise and a promotion at work so I must be doing something right! :)

I am not adjusting too well to life in Naples-the people are nothing like the people at home or even like the people in the Keys. It is just SNOBBY here and I do not fit in. Of course the stress from that is not helping the lupus at all. I am going to make a doctor appointment today and try to get this back under control. This disproves my theory that my lupus was geographical in nature. I really thought since I got sick at home (in West Virginia) that I would be better if I moved back to Florida and part of that logic is correct-I am not as swollen as I would be up north in the winter but I am not any better either............and going without my meds since July has not been a great idea either. :( I was reading a story about a lady with lupus who basically did the same things I have done as far as going off the meds and moving thinking that would fix it. The cold hard truth is-I CAN NOT FIX LUPUS-I can not make it go away and I can not will it away by ignoring it. I can tell the truth about it but I can not seem to remember the truth for long.... some fools never learn. :)

I hope to update more-it has been hard with working ten hour days and all-I hope everyone is well........take care.

Posted by Lisa at 2:11 AM