Hi, just wanted to tell a little about me...
I ran across this site in one of my books on learning to live with a diagnosis of lupus. It's been 13 months since the diagnosis and my emotions have been on a roller coaster. Most of my family don't understand what I'm going through and the only other person I know that had lupus died so for me this group is very important because I don't have to justify or explain what I feel. :cry: I want to know how you all handle being in relationships in regards to possibly being a burden to the one you love?
Sometimes I still can't believe what the tests show or maybe it's that I don't want to believe it. I have days when I don't feel in any way different from how I did years ago and then all of a sudden, the pain sets in for no apparent reason.
It hurts not being able to play with my son and live the active life I was accustomed to for so many years. I was told by my Hemo that I was severly anemic and I took iron supplements and folic acid for years, had 4 blood transfusions and 2 iron infusions before my new PC discovered that the problem was not a lack of iron but the culprit was LUPUS!!!! That was the hardest thing for me to hear because what I knew of this dx was that it was fatal and painful and I did not want to go through that.
Fatigue is a big issue. I wake up between 3:30 and 5 a.m. every morning. I fall asleep round 'bout midnite or so. Now I take Nortriptyline to sleep because I'm so drained during the day. The other problem is weakness in the legs and my Neurologist scheduled me for and EMG/NCS on 10/27 and MRI on 10/28 to rule out MS.
It just seems that there is so much to deal with with this disease and when you think you have finally gotten a handle on things, something else happens.
Nevertheless, I am thankful for all the little things that I seemed to have taken for granted in the past. Its not until you can't do a thing that you really appreciate it and that's where I find myself.
I am looking forward to conversating with all of you. Any advice, info, encouragement, experiences etc that you want to share, I am looking forward to reading.
I've never met any of you but I love you all!!! :oops:
Your response was right on time, THANX
As far as my fiance goes, last night he called round 2 am and we had a heart to heart. He reassured me that there is nothing that I could go through to bad for him to deal with. He actually is ready for us to get married because he doesn't like living seperate from me. At the time we talked, he said those things I needed to hear and I realized that he is sincere and what's going on with me is something that he's willing to go through with me and that makes it so easy knowing that he loves me for me and not because of what I am going through.
Thanx for the words of encouragement and support.
I trust that you will have a wonderful weekend. Once again THANXX!!!