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The Other Illinois Tammy
1,193 Posts
Discussion Starter · #1 ·
Hi many of you know me from the chat room and from posts I have done to your threads. I am a 41 yr. old female with now 2 adult children. I still call them children as I am sure it is a life time job :rotfl:.
When I was 17 I got married and within a few months was expecting a baby. I was so happy, but had so much swelling and was so tired. I was told that is what happens when you are pregnant. I dismissed it as the baby. When I was pregnant 3 years later with my daughter I had the same thing but much worse. Still was told that it was due to being pregnant, and what do I know right so on I went. Then I decided that it was not worth it any more and I had a girl and a boy right so I had a tubial. My ob/gyn was wonderful. When I told him that I had no energy at all he called my gp. My gp told me with to young children at home and taking care of my parents and working and going to school it is a wonder that I can walk. I was only a little older than 20 by now. I looked at it as I am young and I should not be feeling this way. When I was 21 I started having female problems. My period was like clock work and when I was having a lot of pain and bleeding when I shouldn't my ob/gyn said he would agree to a hist. if I was sure I did not want any more children. I had already had a tubial so my diciding to have no more children was done. I went in and had surgery again. When I got to my room found that I had doctors all over the place. It seemed I had a rash and it was not due to the meds and my labs were all over the place. I lost 3 units of blood during surgery so they thought it might of been that after awhile. During my follow up visit with the ob/gyn he noticed that I still had the rash and that my labs were still crazy. I was sent to a dermy for the rash. He spent to next 2 years ruling out everything from grass to sun. He did a biopsy and said it would tell us what was going on. I remember as he left the room he said we will hope it is not lupus.
Keep in mind as a child my mom would take me to my cousins house during the chicken poxes and other childhood diseases so I would get them and be done with them. I never got anything but the chicken poxes weeks after I had been exspoded. I was the healthy child.
My tests came back and he said it is lupus sun sensitivity. Ok, now we know give me the meds and I will be on my way. That is when I learned what lupus was and what might happen to me. I thought there had to be a mistake. I want home and googled lupus, only to find more depression around every pop up. My labs did a turn around and cleared up as fast as they went crazy. I was so confused at what had happened to me. No one seem to have any answers other than you have sle. I started feeling better with the plaquenil and thought ok this is not so bad. I have never felt sorry for myself, I did not have time for that, I had 2 children to raise and parents to take care of did not have time to be sick.
It was not untill about 10 years ago when I took the job I have now that I started feeling extreme fatigue and joint pain all the time. I feel lucky that I was able to go so long with very little symptoms. 7 1/2 years ago I had the worse stress you can have. I had to decide to take my mom, which I had cared for all my life, off of life support. It through my body into shut down. I did not pay any attention to it as I had to get my mom to her final resting place. 6 weeks later it was my dad, I thought I was in a lupus nightmare but still did not have time to deal with it all. I had to empty their apartment and keep working and take care of my children which were into their teen years. I lost my health care and all the meds to treat the lupus at the same time. Ok deep breath nothing I could do about it, so for 2 years I did what I could and lived on steriods for flares. I finally fought to get my medical back and then 18 months ago it happened again, I lost my medical coverage.
I decided that it would not happen again. I have been focus on helping myself and others like me in the states to get badly needed medical help. I still have not got medical coverage but am getting some help with doctors,er visits, some meds, and of course I have all of you for support when things are all messed up in my head. Well that is pretty much it, that is my story not much to it. I hope that this story helps in some small way others like me. You can never give up the fight to treatment or to the best life you can have with a dx of lupus or any other disease that is life impacting. If you do you give up on yourself and that should not even be an opipion.
I hope you are feeling well and that you make the most of your story.
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