Tuesday, June 28, 2011

No My Husband Doesn't Beat Me!

I know, interesting title. I'm sure you are thinking "Huh?, What's that got to do with anything"? A better title would be "No, My Husband Doesn't Beat Me and Other Ridiculous Things I've Actually Had To Say Before I Explain That I Have Lupus." But that was too long. So anyway, to continue my series on the "Things I Hide About My Invisible Disease", I have to hide most of my body. Some days, I think one of those burquas might be useful, but since that would stand out even more than what I have to hide on my body, I stick to wearing jeans or long pants (no capris), long sleeve shirts (I prefer 3/4 cut because I have short arms) & full coverage shoes with socks (ie: no open-toe sandals, flip-flops, etc.) Why do you ask? Well here goes:

The media has done a very good job of creating public awareness about the previously hidden or overlooked (intentionally or not) issue of domestic violence and spousal abuse. I think this is great! People are more informed, money has been allocated and donated for women's shelters and other resources so women have a way to get out of abusive situations. I'm sure lives have been saved by friends or co-workers confronting a woman with obvious injuries and not taking "I fell off my bike" or "I walked into a door" as a believable explanation. These days people see a woman with bruises and instead of thinking they fell, they tend to think that there is a high probability that the woman is being abused, most likely by her husband or boyfriend. People are so aware, that oddly, abuse seems to be the first place their mind goes when they see a woman with bruises in particular. Moreover, the media has impressed upon people that they have a civic duty as a good & responsible friend, co-worker, or complete stranger "Good Samaritan" that they must intervene in some way. Even I have called the PARENTS of a 20-something year old friend to inform them that their daughter was in a physically abusive relationship (it felt like I was tattling in some weird way) & also got the police involved. I lost the friend, for a while, until she finally got rid of the guy. We've mended the fence (ie:we're friends on Facebook & keep trying to get together for lunch), but we've never really talked about the whole situation. Still, I've always felt that I did the right thing.

All this awareness however has had some draw backs for someone like me...with Lupus. It means that I have to cover myself from neck to toe because if I show my arms or legs in public, I often get those tell-tale questioning looks from people who are thinking to themselves "Is she being hit?, Is she an abused wife?" Case in point: My arm on a relatively normal day:

My arm on a regular day. Specifically 5/11/2011

Also 5/11/2011, it's really hard to take pictures of your own body!

My arm on 5/13/2011

Also 5/13/2011
The bruises on my arms are normal in that I have them almost all the time. The purple spots were an oddity, they are actually Petechiae "(pah-TEE-kee-eye) are tiny red spots on your skin, especially on the lower legs, that result from low numbers of platelet in your blood, a condition called thrombocytopenia. Although thrombocytopenia is common in lupus, serious bleeding as a result of the low number of platelets usually does not occur."
I have always associated petechiae with someone being choked to death. The petechiae or petechial hemorrhages will show up in the eyes, but maybe this is because I watch too much Forensic Files, CSI, Law & Order, or TV in general. I actually got these petechiae from scratching an itch. Seems crazy to me but I had an itch and I scratched it without thinking and later noticed these beautiful purple dots. You can kind of make out the lines. Of course "people" think it looks like finger marks, which they are, but they're mine. They are not from the imaginary/non-existent abusive husband/boyfriend that beats me.

This is the same arm today 6/28/2011, bruised.
Really what got me thinking about how much I hide my body is this sweet little card my then 4 year old daughter made for me at school for Mother's Day.

When I read the first line: "My Mom looks pretty when we go on vacation she dresses up in a dress or skirt", it dawned on me that my daughter does not know me as a woman who wears skirts or dresses. Now really, we've never taken her on a real vacation, so she's talking about special occasions, like Christmas or Birthday celebrations when I do wear dresses. I remember back in 2000, when I started the job where I met my husband, that I didn't even own a pair of jeans. The dress code was business casual, but all I wore for about the first year were skirt suits, that's all I had and all I was used to wearing. I eventually had to buy some pants and jeans as "business casual" to a management team in their 30's and employees right out of college pretty much meant nice jeans and a top. If you were wearing a suit people thought you had an interview for another job.

Now however, I don't wear skirts or dresses because I am always hiding my legs. If I do wear a skirt or dress it is with very opaque stockings or tights. Here is the reason why:
Right Leg Bruising 5/11/2011

Legs on 5/11/2011
I actually have no idea how I got these bruises and moreover they do not go away or heal. Or I just continue to get more bruises, some from running into furniture, but most I'm really not sure about. I have more bruising on my hips and upper thighs but I'm too modest to post any pictures of those. I get the hip & upper thigh bruises from bumping a door with my hip to open it or keep it open when my hands are full. I also however hit door handles, end table corners and chairs. With the exception of bumping doors to open them, the others are unintentional but stem from the following: I'm not always aware of where all my body parts are and I'm clumsy, I have gait ataxia (don't always walk straight especially on uneven surfaces), I often can't feel my feet which makes navigating regular things difficult, and lastly some I have No Idea how I get. You'd think I'd know how I got a mark that's going to stay on my body for months, but most I don't. I'm more prone to bruising because I have reduced blood flow to my extremities due to constriction of the blood vessels and vasculitis. I guess it's akin to diabetics with non-healing wounds. Here are my legs today over a month from the first pictures, I don't see any real difference:
My legs today 6/28/2011
She's Got Legs...She knows how to bruise them- 6/28/11
I've tried a few products to try and cover the bruises. One special corrective make-up Dermablend claimed that it could cover bruises, vitiligo, birthmarks, and things that sounded a lot worse than my legs, so I shelled out the money to try it. All I got was bruises highlighted by the weird looking makeup on them. Rather than concealing my bruises, it made them stand out even more. I was very disappointed.

Thus if you know of any product that would cover these bruises, look natural, and not wipe off on clothing, I'd love to hear any suggestions.

It's an odd thing to wish that you could wear a skirt or dress on a regular day (not a special occasion) with some sandals or open toe shoes and NOT have people wondering if my husband, the most wonderful husband in the world, beats me, kicks me, or takes a switch to my legs. It would be nice to not have to worry about the random stranger instant interventions in Walmart & to be able to chalk up any strange looks to maybe having a booger...that would be a strangely wonderful day.

7 comments:

  1. i just came across your blog while researching how to get rid of brown spots on (my face). I just had to say hello as I have had Lupus since i was 20 (1988)...going on 23 years now. Of course many of us bruise with prednisone but i found out that too much heprin during dialysis (this is my theory) that made me bruise on my shins like you and they have never gone away. I have been saying the same thing. I see all these woman in cute dresses and skirts and I have not worn one since 1999. My "stains" are more on my left shin but yours look better. Go for it you can totally wear a skirt. Mine are more individual bruises clumped together and darker. I too have tried every makeup. They all look ridiculous. The makeup industry is so big. I had my leg up on a counter at sephora once with 3 ladies helping me and not one type of foundation/concealer looked good and when we went outside in the sun it really looked awful and fake. I can't believe there is not a single product that can work.
    Be well.
    Julie

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    Replies
    1. Hi Julie!
      I read your reply on a blog I came across & after reading it, I wanted to share w. you a 'possible' cause for the 'staining' you have on your legs...her's my comment cut/pasted for you to read if you'd like. Take care & stay strong! 23 yr's a fighter & that's FANTASTIC!!! <3
      I just stumbled across this blog while doing research on rare/unusual skin problems I've had; I have Rheumatoid Arthritis a "rapid, progressive" form since the young age of 19...I'll be 38 next week.
      It was the pic of your legs with "THE BRUISES THAT NEVER WENT AWAY" that made me want to reach out to you...Have you ever been on "Minocycline"? It's actually an antibiotic in the tetracycline family but is commonly effective for ppl with RA (& SLE too). There is a 'rare' harmless side-effect that is called 'minocycline staining' which is similar to a 'bruise that won't heal' and it's coloration is green-to-bluish. I had the reaction in the same place as you, on my shins. I am a nurse of 18 yrs and I haven't seen it on anyone other than myself but it is 'rare'. My rheumatologist sent me to one of her collegues, a dermatologist, in 1998-99 and he (the dermatologist) actually was writing a book & took pics of my 'staining' for his book cuz it was not something that was commonly seen.
      I thought I'd share this you & it could be something worth inquiring about. "A shot in the dark" but hey, it's worth it for me to take 5 min's & offer my experience in hopes that maybe you'll get an answer for a change; considering auto-immune diseases aren't exactly 'generous' with explanations, right? lol ... hope you're doing well! Feel free to get in touch with me if I can be helpful in any other way. STAY STRONG! :)
      Kellie

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  2. I just stumbled across this blog while doing research on rare/unusual skin problems I've had; I have Rheumatoid Arthritis a "rapid, progressive" form since the young age of 19...I'll be 38 next week.
    It was the pic of your legs with "THE BRUISES THAT NEVER WENT AWAY" that made me want to reach out to you...Have you ever been on "Minocycline"? It's actually an antibiotic in the tetracycline family but is commonly effective for ppl with RA (& SLE too). There is a 'rare' harmless side-effect that is called 'minocycline staining' which is similar to a 'bruise that won't heal' and it's coloration is green-to-bluish. I had the reaction in the same place as you, on my shins. I am a nurse of 18 yrs and I haven't seen it on anyone other than myself but it is 'rare'. My rheumatologist sent me to one of her collegues, a dermatologist, in 1998-99 and he (the dermatologist) actually was writing a book & took pics of my 'staining' for his book cuz it was not something that was commonly seen.
    I thought I'd share this you & it could be something worth inquiring about. "A shot in the dark" but hey, it's worth it for me to take 5 min's & offer my experience in hopes that maybe you'll get an answer for a change; considering auto-immune diseases aren't exactly 'generous' with explanations, right? lol ... hope you're doing well! Feel free to get in touch with me if I can be helpful in any other way. STAY STRONG! :)

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  3. Go online and learn how to cover bruising and marks properly. Trying to hide them with something the same color as your skin is inadequate. You need to learn about using opposing colors. Example : purple bruising can be made more neutral with something with green undertones. Then cover delicately with flesh color. Read up on covering birth marks. Hope this helps. Peace.

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  4. Were you ever able to find a solution? I have lupus as well and have had bruises exactly like yours (worse actually) for about 2 years now, which is most likely due to the prednisone since that's when i started taking it consistently. Have you found any way to get rid of it?

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  5. I know this is an old post, but your pictures caught my eye. I just came back from a beach vacation where I was sunburned in a few areas, but my legs look a lot like the pictures you show. I have what looks like a weird bruising pattern on my lower legs, but it's not dark, just red. Looks like a rash, but it's not raised or anything and doesn't itch. I've also had problems with low platelets in the past so it's sort of making me wonder if the sunburn brought out something that might be going on.

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  6. Just came across your article while searching for an answer to my "bruises that won't heal". I'm 49 and just diagnosed with Lupus after 6 years of trying to figure out what was wrong, along with Fibromyalgia & Arthritis. I hate the way my legs now look and my arms are also always bruised, but I still wear shorts and summer tops... Don't care what others think, but I agree that too many ppl think 1st of abuse. You should wear whatever makes you happy. Life is way too short to worry about others opinions. Thanks again for your article!

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