Monday, September 26, 2011

No My Baby Doesn't Beat Me!

It's been a while since I posted. I'm all backed up with things to write about. This post was originally started sometime in July. Please forgive my dated babbling but I wrote it & saved it as a draft so I'm posting it - with some editing:

This year June was more busy than the holidays in November/December. I think this has to do with having children and a large extended family. My oldest daughter graduated (from preschool/junior kindergarten). She had a whole cap and gown ceremony (heck I've never worn a cap and gown-my small private school required girls to graduate in white dresses but it was worse for the boys who had to wear blue blazers with a school patch thingy on the pocket), she also had a big dance recital (her first), and about 3 different birthday parties or get togethers to celebrate the big 5. Thank goodness my wonderful husband took over the party planning this year & thus I was not in bed for a week after her party. When did kids birthday parties become such a huge (and seemingly competitive) thing? Topic for another time.

I finally decided that since one didn't exist, that I was going to start a Lupus support group in the Santa Clarita Valley using The Moms Club of Castaic does it and because I'm a bit slow, it took a little while for it to dawn on me that I could start a group myself. Then I mentally stressed about the idea of being responsible for something, because I don't know if I'm going to make it out of bed on a regular basis. Then June came along and I it was event, rest, event, rest, event, rest, rest some more, see the doctor, rest, Kung Fu Panda 2 in 3D themed birthday party for daughter at the movie theater (hey that's all that was playing at the right time). Then I got an email that someone else had beat me to it and started a Lupus, RA, Fibromyalgia and everything related support group in Santa Clarita. So I went to the first meeting of the group to end my crazy June and then I rested some more.

But back to my original (way back when topic), I have a new thing to hide, along the lines of my previous post about how people actually think that my husband beats me because of my ever present bruises, I found some new ones (bruises that is) and although I don't know WHEN I got them, I know EXACTLY what they are from which is a rare thing...see if you can guess before I tell you...

This is my shoulder - Thought to self (Duh! Queen of the Obvious oh wait Princess of the Obvious and Jeez my Buffalo Hump looks HUGE in this picture! Move On!)

No! I can't get any paler, I already have a Vitamin D deficiency because too much time in the sun will cause a flare and thus I am a shut in (sort of).
Kinda looks like planets in one of those solar system dioramas you had to make in elementary school
Extreme Close-up (Could be Ted Bundy's bite mark, oh wait they offed him a long time ago)

I just realized that this post's title probably will give this away but oh well! have you figured out what it's from?

Alright, well those lovely bruises are 1 little, 2 little, 3 little, 4 little baby finger print marks. The bruises are from my 9 month old baby daughters fingers where she held on to my shoulder when I was carrying her at some point in time in the last week or so (this being back in July). Yes, I have a little one, not sure how that happened, and it barely did, but again a topic for another post that I'm all backed up on writing.

My poor, wonderful, husband will likely be accused of causing this injury (in people's minds if they see it. No one has ever approached me yet about going to the women's shelter but I think it's only a matter of time). Really though - My baby loves me to bruises! I'm not sure where that falls on the baby love scale but since they were caused by her clinging to Mommy, I think it's probably pretty high. Something to feel good about today - Yea!

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.