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Lonely

I'm 38yrs old. I was recently told I had systemic lupus * not sure if I spelled that right*....

Posted by jennkz

I'm 38yrs old. I was recently told I had systemic lupus * not sure if I spelled that right*.
I was told over 6yrs ago that I had Lupus but it was a different type and it was only going to cause me skin issues, such as rashes. I knew to stay out of the sun. I honestly thought it wasn't that big of a deal. I ignored what they told me to do. Went out in the sun, never wore protection on my skin. I just dealt with the rashes and went on with my life.
In 2010 I became pregnant with my 3rd child. I really did not know anything about Lupus and had no idea that it could cause problems with my pregnancy. I had my son 1 month early and was on bed rest the entire time. I had never been so sick in my life. I remember I started losing my hair and I had no idea why it was happening. I thought it was from the pregnancy. None of my dr's at the time were even worried about the Lupus, never spoke of it.
About 3 or 4 months ago I developed lumps that were painful and itched very badly. They were on my legs and ankles. I had thought it being summer time that I had been bit by a bug. When I realized the lumps were spreading and my ankle was swelling I called my Dr. My Dr had me come in and thought I was having an allergic reaction to something. I knew she was wrong but had hoped it would go away. I woke up the very next day with a lump on my other ankle and it was the size of a golf ball. I called my Dr and went right in. I could tell she was concerned and she told me she had no idea what was going on but thought that I should see a specialist for my Lupus. That was when the panic set in for me. No one ever acted concerned about me having Lupus. I never thought it was anything I had to worry about. I saw a dermatologist and the Rheumatologist and after having a skin biopsy I was told that that I had SL. The news hit me like I had just been told I was going to die. Never been afraid like that before in my life. I am always broke out in a rash on my legs, back, arms. I rarely get any type of rash on my face. I still get the lumps and they hurt bad at times and they itch worse then having poison ivy. There is nothing they can do. Steroids did nothing. The medicine I was given, which I can't spell it but it starts with a P, I can't handle the pain it causes my stomach. So basically there is nothing they can give me. I am always wondering what is going on inside of me. I know how horrible I look on the outside so I wonder how bad I am in the inside.
I'm sad, angry. I feel like crap every day all day. If it's not all of my joints hurting then it's my stomach acting up. I was told 9yrs ago I had IBS. I think now it was the Lupus. My relationship with my kids father is ending because he can't handle me being sick all the time. I have no friends. I have no social life because I'm too sick to leave the house. My kids are all I have. I don't work. I'm on SSI. Computer and my phone and tablet are all I really have as far as communication with outside world.
I have stayed away from message boards for support. Other people talking about their stories have scared me. Worried I will go through the same things that they describe. Honestly I don't know what to do. There are no support groups or any type of agencies in or around my area I can go to. I feel alone, and very angry.View Thread

Posted byjennkz

13 Replies | Reply | Watch This DiscussionReport This| Share this:Lonely I'm 38yrs old. I was recently told I had systemic lupus * not sure if I spelled that right*....

Reply: Lonely

yes I have been to many specialists for my stomach. I was told I had ulcers but I took the...

Posted by jennkz

13 Replies | Reply | Watch This DiscussionReport This| Share this:Lonely yes I have been to many specialists for my stomach. I was told I had ulcers but I took the...

Reply: Lonely

Thank you so much for responding. I have had so many terrible times with my stomach and I'm...

Posted by jennkz

13 Replies | Reply | Watch This DiscussionReport This| Share this:Lonely Thank you so much for responding. I have had so many terrible times with my stomach and I'm...

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