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!!! ops: