Alicia's Journal
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February 08, 2010
????
Let me start by saying don't feel sorry for me just help me understand!! Ppl lie and get help like medicaid and SSI...I tell the truth and nobody wants to help!!! I have seizures, lupus, panic attacks, and waiting to find out if I have fibromyalgia...I have been denied medicaid and been turned down by SSI three times. Ppl say they have anxiety and can not work or be around others and get SSI...???? I understand some ppl might have that problem...I have up to 10 or more panic attacks a day and it does suck!!!
I just get really angry because I wonder when ppl are going to ACKNOWLEDGE US...LUPUS COMMUNITY. -
February 02, 2010
When it all started
I was 5 months pg and I had my first seizure ended up in ICU got through that started taking Dilatin (DON'T RECOMEND FOR ANYONE). A month later I was in a bad car accident...I was fine and so was the baby but I was left with scaring on my face and being 17 and pg in high school I thought it was really bad. Thats when I had my first experience with steroids...I was not healing "the right way" so I had to get steroid shots in my face it was very very painful. I had my baby and the seizures just got really bad. I was having up to 5 seizures a day and they could never figure out what was causing them. I applied for SSI and was denied. I wanted to work and have a normal life so that is what I did...I learned to deal with everything and having helpful and understanding ppl in my life helped. In '04 I had my second baby and had moved back to my hometown. Thats when the Lupus kicked in!! For some reason I was hurting and it was hard for me to get around. It hurt me so bad just to change a pamper but didn't want to tell anyone about the pain because I didn't know what was srong with me. After a month I went to the doctor and we tried all kinds of meds and nothing worked. There again I leraned to deal with the pain and took ibprophen like crazy. I went to visit family and the Lupus came in full force. I was in the emergency room every other night with the most horrible pain and dropped down to 95 pounds. I was finally admitted into the hospital and they couldn't tell me what was wrong with me just what they thought it could be. I started seeing a doctor and he was really mean and he didn't believe anything I was telling him. Until I had a bad flare and I went to see him and they ran all the tests and he told me I had Lupus. I had no idea what this was and other people that I would talk to would just tell me that it was not all that bad of a disease to have. Well it is...all the meds, weight gain and loss, rashes, loosing your hair, not being able to move gosh I could keep going and going. Its really hard right now because I have no insurance and ppl don't understand how hard it is. I am very lucky beacuse I do have my girls, family, and a very understanding boyfriend.