SSI Letter from Me.

Hey guys. Sorry I didn't get back to all your comments yet, but I got them and I sincerely appreciated everything you guys suggested and said. Thanks so much for being so supportive, and I'm always thinking of you guys and hoping your bodies are doing better than mine. ;)

So, this is the farthest I've gotten with disability. Someone finally called me and said he was sending me an activity form and also one to my mom and to my boyfriend. He said I could type a paper of my view of my condition, as many pages as I want.

I decided to really get on it today, and this is what came out - sort of stream of consciousness.

In 2002 I was diagnosed with Evan Syndrome. That summer, I went through Methotrexate and Rituxan chemotherapies. The Rituxan put me into remission. By late 2002 I had already gotten myself a job as a customer service representative at the mall information booth. I loved my job, and was feeling good again. I decided to enroll in community college for the 2003 school year.

In December of 2003, I became sick with the flu. I took a few days off, went back to work, and it just steadily got worse. From December 03 to February 04, I missed several days of work, was hospitalized twice, and I just couldn't seem to get better. I was doing school and work, and I had to make a choice. I decided to quit my job. I soon had to quit school too.

I relapsed remission in Summer 2004, and was treated with more Rituxan. After another successful Rituxan treatment which put me into remission again, I still didn't feel the same. Since then, I haven't been able to work, because of my exhaustion, weakness, pain and extreme sensitivity.

By 2005 I had been diagnosed with Lupus and Fibromyalgia. My doctor didn't inform me much about my illness, and I didn't learn until recently that not only do I have a bad reaction to sunlight, but a worse reaction to any fluorescent lighting, as do a lot of Lupus patients. I've been taking steps to avoid sunlight and UV rays at any cost. I use SPF 15 moisturizer on my face, then I apply another layer on my face and head to tow with SPF 55. I also wear a hat and long sleeves, but they don't shield very well. It only takes about 20 minutes for me to have a reaction to fluorescent lights (sweating, tiredness, shaking, weakness, and nausea.) and you can't go anywhere without fluorescent lights nowadays. It's even to the point that regular incandescent bulbs could be banned altogether. After being exposed to fluorescent lights and sunlight, I am also more susceptible to getting sick or having a Lupus flare, which makes every part of my body a lot worse.

My daily routine isn't very fun. It's incredibly frustrating for my body to be so physically exhausted, while I want to be doing something productive. If I push myself too hard, it makes everything worse, and I've learned that by now. I have a lot of allover aches as well as a very low pain threshold. I have Fibromyalgia tender points which I'm always bumping into, which is excruciating. I can't sleep at night because it hurts to lay on my body: I can never find a comfortable position that doesn't feel like I'm putting pressure on a bruise somewhere on my body. There is always an area of my body that is in pain. It just never ends.

It's like the Lupus and Fibromyalgia treatments cancel each other out. I want to get more exercise and work my weak muscles, but I can't be out in the sun, I can't be under UV rays, it hurts to move, it hurts to lay. I get lightheaded, weak and nauseas when I do any kind of physical activity.

My stress levels are still through the roof, which isn't helpful at all to the illnesses I have. When I have a panic attack, I get sick. I have panic attacks, when I just can't find any help. My doctor from 2002 - 2006 was abusive and cruel, causing me to have a bad nervous reaction when at an appointment or calling my doctor. I feel like I've tried every possibility to get someone to notice that I need medical attention that is impossible for me to supply to myself, and either nobody can or nobody wants to hear me.


Suggestions? Help? PLEASE.