Tara's Story

My name is Tara , I am 30 and have discoid lupus. I have had the disease for 11 years. I haven't yet been denied disablity through the government, because I haven't yet applied for it. However, awful as this may sound, I already expect that I will eventually have to apply for it and expect to be denied. I have just lost my job. As of November 14 2008 I would have been there 2.5 years, on contract (they keep everyone on contract for 3 years and then hire you on) . Anyway, with my lupus I also have extreme fatigue, arthritis, and depression. Not to mention how I feel emotionally about myself because I have over 40 lesions on my face alone. So my story is this....I went off on medically supported short term disablity leave through the bank from May until June--this was because I was diagnosed with depression, as many people are that face a chronic illness like lupus. In July I had to go off of work again, this time due to alupus flare up. (Very common in the summer months for my kind of lupus). So I was off from July until I received a letter in the mail from my manager stating that my contract wasn't going to be renewed, and my employment (and of course benefits) would end as of September 30th. Luckily I just got approved for EI which just came through today! (What a relief!)
I am writing you this story though, because I feel like I've been rejected and wrongfully dismissed from my job due to my disability. As an employee there, you are evaluated based on your job performance, and I was rated a 'distinguished' employee and was compensated financially for that rating. My question/what I am most pissed off about is that how can I be rated a distinguished employee and then when I am going through a really hard difficult time, they let me go with the excuse of "work shortage/no work/upcoming department changes."I still have friends there and have been told that they've already hired someone to 'replace me'. So there's no work for Tara in the dept. but there's work for someone else? I would love to expose them for what they are money hungry assholes with no compassion for human life. Anyway....it's because of them and how they've treated me that I will be applying for disability. I think what most people with lupus feel is that, because they 'look fine on the outside' it's hard for others to truly know what the lupie is feeling on the inside. I guess in a way, my kind of lupus shows how I feel on the inside because I have all these f'ing lesions all over my face. Here's what I go through because of my lupus.....
a) So I literally wake up in the morning, and don't even recognize who is staring back at me in the mirror.
b) I am afraid to let anyone see what I really look like without my special camoflauging make up on. I feel like a lepor.
c)My husband hasn't even seen me without my make up on, I wear it to bed everynight. Obviously this lack of self confidence hinders our sex life.
d)I can not go in the sun, and when I do I must wear 50 SPF
e)it seems like I can't avoid flourescent lights, they were at work too, so that didn't help.
f) I don't go swimming (haven't been since I found out that I have lupus) because my make up will come off, and people will be rude to me or think it's contagious or something, and I don't like feeling vulnerable exposing myself like that, because the lesions are all over my upper arms too.
g) due to the lesions on my arms I always have to wear long sleeves, no tank tops etc. I honestly don't think that people have ANY idea what this is like as a young woman who is hindered by her appearance. I used to play baseball but had to quit that because if it rained during a game, I would absolutely panic thinking that my make up is going to come off and people are going to see my ugly face underneath
h)Some days (not all days!) I feel soooooo sore, to the point that I can hardly type on the keyboard
i) some day (not all) my muscles are so sore that my cat can't even sit on my lap
j) some days I am so sore that my husband can't even give me a massage because although I am sore in my neck and shoulders and think I need a massage, it is far to painful to let him do it. It feels like I am bruised all over and he's massaging my bruises :
k) I have had to go on anti depressants last year because I have such a horrible view on life and myself now
l) I have lost my job because of this disease, and I have always been a really hard worker, who enjoyed working. I've held a steady job since I was 14 and have NEVER been fired-until now.
m)I don't go camping anymore, because of the sun exposure, and my inability to be able to go swimming, so I miss out on that. I don't go to the beach anymore either.
n) sometimes (and other people have told me what others say) people think that I simply don't want to work, instead of the truth that I can not work when I am sick. Others have told me what people have said, 'she looks fine" well if they only knew what it feels like on the inside.
o)if I do anything physical (say for example rake the leaves) I am SORE for at least 3 days afterwards. unfortunately this includes having sex, I am really sore over my entire body after doing anything physical.
p)I am soooo tired all of the time. I can go to bed at 11 with my husband, and not get up until 11am the next day. I need at least 4-5 more hours of sleep than a 'normal person'---hence why it's so hard to hold a job, as I was always calling in sick.
q)the pills I've been prescribed are called plaquenil, for the lupus. they haven't improved anything. how do you think it feels to take medicine religiously for 11 years, and yet my disease keeps getting worse? It started out as one lesion on my right cheek, and now it's spread to over 40 on my face alone.
r) I am really really scared to have a baby, because I know it is only going to get worse
s) for my wedding which was just over a month ago, I was having panic attacks just thinking about our first kiss....what if he kisses me too hard, and rubs all my make up off my nose, than I am going to be exposed in front of everyone. I was JUST dreading it. That's not how your freakin wedding day should be. But it just goes to show how damaging this disease is.
t) I've had people say to me...'did you get bit by a spider or something?"or "Did someone put a cigarette out on your face'.I will never ever ever forget those comments. They've literally scarred me for life.
u) medical benefits do not cover camoflauging make up. How ridiculous. It's not that I want them to buy me my liipstick and mascara, however, I feel like a burn victim, my face is now deformed and physically changed.
v) medical benefits don't supply sunblock, which is mandatory for my condition.
Anyway, I was trying to let you know how I feel and how my experience is with lupus everyday.
Sincerely, Tara .