I have been on here for some time but was diagnosed on 8/8/11 a day I will never forget. I have been fighting this for over 6 years and some symptoms I have fought all my life, at one point in life I was told I have crazy and made all this up, I understand some of you go through that. My husband and I have been together for over 16 years, he has been amazing, especially for all that we have been through.
We moved in together only knowing each other 3 days, and 4 months into living together we lost our house to a fire and had which lno insurance. It took us 3 years to recover and then to get married. 5 months into our marriage We lost my 6 six year old son to drowning. I spent 8 years in severe depression because of it. Which lead me down a horrible road that caused me to almost lose my family,My husband and my other 2 children. NOW THIS. WHAT NEXT??
There is no one that we can think of in my family that has lupus, but there is plenty of medical issues in my family. My mother is in Kidney failure, ( I feel that she has lupus but has never been tested). Right now she does not know that I have lupus, my dad and I feel that we do not need to tell her at this point but we do realize that she will need to be told. I also have a handicap brother and we decided that he would not be told. That was my decision I don't feel that he will understand. Both of my children are grown, one is 22 years and the other will be 21 in October. I worry that one day they will get the awful lupus as I see signs in them.
Yesterday I went to my first Rheumy appointment it was very upsetting to me before I even went there, and now that I have gone and had to take over 13 different blood test I feel that it is driving me crazy. I can not work and have applied for disability and now I am awaiting a decision. So I am home driving my self crazy over this, My hair is falling out which is not helping. I can't talk to my mom about this and my best friend just lost her mother and her aunt this week, so I can't talk to her at this point. I have been stuck at home because they have kept me on high does of prednisone which I just finished up, and going outside well that's not possible because if I got with in 15 minutes I am sick and swelling up like a balloon. It is horrible.
Right now I feel real bad for my husband because he has to work so much for us just for me to go to the doctor, we both lost our jobs a few years back and lost all our health insurance, so he is working more than normal, we he is not working he is spending all his time with me. I feel that all this is getting to him, he has his own health problems and not taking care of his self because he is talking care of me. I am trying to stay positive but it is hard. I am trying not to get depressed because I know that will not help me or my family. I have been down that road before and it is not a good one.
I want to cry and scream and jump up and down and ask why me, why now, what did I do to deserve this, Haven't I been through enough, My family can't take no more.
sorry this was a long post but I am trying to keep my self above water, and not go under.