Showing posts with label hiding symptoms. Show all posts
Showing posts with label hiding symptoms. Show all posts

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.

Friday, May 27, 2011

The Things I Hide About my "Invisible" Disease Lupus - Part 1

Lupus and other auto-immune diseases are often called "invisible" diseases because for the most part you can't look at someone and see that they have Lupus. In fact I actually just call my list of conditions "Lupus" because that's the only disease most people have heard of, even if they aren't sure what it is. I'll save my list of conditions for another time.

I was thinking about the whole idea of an "invisible" disease and realized that actually there are a lot of things that are invisible because I intentionally hide them. Since this is Lupus Awareness Month, I've decided to "show" some of the things I hide about my "invisible" disease and provide some information no what I'm showing you via information from & links to The Lupus Foundation website. I'm doing this in parts...so I can change my mind about what pictures I want to post...LOL. Okay so here I go.

The Beautiful Butterfly
Usually the one thing people have heard about Lupus is something about a "butterfly" rash on the face. It's not quite as pretty as a butterfly, believe me. I thank God for MAC & the invention of concealer. What the heck does a butterfly rash look like? Well one looks like this.
I look like I'm blushing all the time. You may notice the weird thing I'm doing
with my mouth & the dark circles under my eyes, those are a topic for another post.
Right Side Close-Up
Left Side Close-Up. Lovely broken blood vessels that look like red strings.

Up My Nose Close-Up


Okay, so that's a start. It really doesn't look like a butterfly to me, mine is kind of more all over. This is actually my "rash" at it's best as it's been improved by steroids and I haven't seen the sun in a few years now. What's the big deal with a red face?

This is actually Acute Cutaneous Lupus Lesions:
"Acute cutaneous lupus lesions occur when your systemic lupus is active. The most typical form of acute cutaneous lupus is a malar rash -- flattened areas of red skin on your face that resemble a sunburn. When the rash appears on both cheeks and across the bridge of the nose in the shape of a butterfly, it is known as the "butterfly rash." However, the rash can also appear on your arms, legs, and body. These lesions tend to be very photosensitive. They typically do not produce scarring, although changes in skin color may occur."

Okay, so I started with something simple, easy to hide too. A little make-up and concealer and the red is gone, but this means that I have to wear make-up all the time if I don't want to look perpetually sunburned, blushing, like I'm having a hot-flash, or a number of other things that people have asked me if I am suffering from when they see this, particularly when it's more "active".

Psychologically for me this one is difficult. This is my face. Aside from make-up you can't really hide your face. I actually tried to have laser treatment on my face in hopes of lessening the redness. I went to a very well known dermatologist in Pasadena and explained all of my medical conditions and medications as I was afraid that certain medications that thin my skin and make me sensitive may preclude having laser treatment. I was assured that it was fine and so started the zapping.

They used this square thing and went portion by portion. I was told by the woman actually doing the zapping that it was not supposed to hurt really and it didn't at first. She moved from the left side of my face up and around my forehead. It started to sting. She then started down the right side of my face and it started to really sting. I saw the lady's face who was giving me the treatment, she looked concerned. One more zap and I screamed in pain, her expression turned to fear, & she ran out of the room to get the doctor. I sat up and looked in the mirror, my face was red of course, but within a minute blisters started forming on the right side of my jaw.

There was chaos in the office as everyone came in to see "the girl with blisters on her face". I was told this had never happened in 15 or 20 years and blah, blah, blah. Ice packs were brought out and salves and other stuff I'm not even sure what it was. The lady who had been doing the zapping was clearly holding back tears and looking to the doctor for some explanation. As usual with any and all odd reactions, symptoms, test results, etc. the doctor came up with the grand explanation..."It must be the Lupus" (umm...hello, I told you about the Lupus BEFORE...so this wouldn't happen). I was sent home with a grocery bag full of stuff to put on the blisters which had gotten even bigger in the chaos. The doctor bandaged up my face & off I went with my grocery bag. The lady who zapped me called twice a day for about a week to "check" on me (make sure I wasn't going to sue her) and told me over and over again how this had never happened before and she just couldn't understand it.

The truth was, I COULD understand it, because it probably was the Lupus.

So, I ended up with 2 rectangular (the zapper thingy) shaped scars on my face, the are very light and relatively unnoticeable (so I'm told). Of course, I can see them just fine and to me they are these huge, glaring, reminders of my disease, my vanity, that I'm not as pretty as I used to be, that I can't fix this problem, that some doctors are idiots, that you should trust your gut (I had a feeling it might not work, that's why I asked so many questions, told him about every condition, & every medication), and that I am Living With Lupus (and a bunch of other stuff). 

This show and tell is tame. So my next installment should be something more interesting...how about "The Buffalo Hump"? See you for Part 2.