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 Meetup.com. 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 Meetup.com 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!

Okay...so 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 8...no 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!

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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.

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Laughter Not Lupus

While Lupus is a large part of my life, it is not my WHOLE life, at least I work at it not taking over. Another Lupus blogger noted that she had read a bunch of Lupus blogs and that none of them talked about anything good in their life. I don't want to be that kind of blogger. My tagline is "I have Lupus and Sometimes Lupus has Me", that means that Lupus doesn't have me ALL the time. So while I still have more pictures of things that I hide about my Lupus, I'm going to make an effort to post about the rest of my life which is very blessed and also take time out to laugh!
So this has absolutely NOTHING to do with Lupus, aside from the fact that laughter releases endorphins which make you feel better. I know this has been posted around, but I really love this video. I can't get the darn song out of my head & she actually has a great voice!

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Am I A Green Tea Party Pooper?

I saw this article today and it made me think:

Green Tea Helps Fight Autoimmune Disease

How many things can Green Tea really cure? Is it me or has green tea become the fish oil or bee pollen extract, or echinaca, or garlic extract of our decade? I don't mean to be a party pooper but I am a bit skeptical about the number of claims that I've heard about green tea. I'm sure it's better than drinking soda pop but is it better than drinking water?

I am a bit addicted to Diet Snapple peach or raspberry Green Tea & I drink at least 2 bottles a day so I should be cured of everything any time now.

Am I just a complete cynic?

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My Patriotic Feet That I Can't Feel

First I should say, I am completely incapable of painting my own fingers or toes. Since I was allowed to wear nail polish, I've tried every way possible to put it on myself but I just end up with a huge mess of polish all over everything except my nails and if I do manage to get it on my nails, I'll have dinged it all into a mess within 15 minutes anyways. Even if I go and get a manicure, I have to sit under that box thing for about an hour or so until I can make it into my car without needing them to fix some damage I've done. I've never been one of those high maintenance girly girls who have a standing weekly appointment for a mani & pedi, but I did enjoy getting my toes painted up red and LOVED to get some cute little flower art work too.


Today, I can't remember the last time I got a pedicure. That's because I am too embarrassed to have someone work on my feet. I have both Raynaud's & Vasculitis. What's that and what does it have to do with you getting a pedicure? Well:

"Raynaud’s phenomenon is a condition in which the blood vessels in your hands and feet go into spasm, causing restricted blood flow. Lupus-related Raynaud’s usually results from inflammation of nerves or blood vessels and most often happens in cold temperatures, causing the tips of your fingers or toes to turn red, white, or blue. Pain, numbness, or tingling may also occur. If you have Raynaud’s phenomenon try to avoid cold conditions, and, if necessary, wear gloves or mittens and thick socks when in an air-conditioned area."

"Vasculitis is an inflammation of the blood vessels. Inflammation is a condition in which tissue is damaged by blood cells entering the tissues. In inflammatory diseases, these cells are mostly white blood cells. White blood cells circulate and serve as our major defense against infection. Ordinarily, white blood cells destroy bacteria and viruses. However, they can also damage normal tissue if they invade it."

 Together & alone these condition's make my feet look like this on a good day:

My red, white, & blue (patriotic colors at least) feet that I can't feel, my toenails don't get enough blood to grow.

It's more difficult that I thought to get an accurate picture of what my feet look like, this is the best I can manage with or without a flash, but they still don't show what they look like in real life.

The vasculitis effects the whole body in different ways, including the peripheral nerves.

"Peripheral nerve symptoms may include:

• numbness and tingling (usually in an arm or a leg, or in areas which would be covered by gloves or socks)
• loss of sensation
• loss of strength (especially in the feet or hands)." 

I actually often can't feel my feet at all, if I do they are perpetually cold, and I am never without at least one or two pairs of socks on along with warm shoes. I can stick my feet in hot water to help get the blood circulating, but this only last for a short time after I take my feet out of the hot water & I can't exactly carry around a vat of hot water with me. There are boot warmers made for skiing, little packets that you shake up and they warm up for a while, but these are marginally helpful, usually when I'm at home, they are kind of hard to walk around with in your shoes.

Walking when you can't feel your feet is an interesting undertaking. It's even more difficult when they are tingling which can be very painful. I can liken it to when you've been sitting on your feet for a long time and they fall asleep and then begin to wake-up. Take that sensation when it's painful not just tickley and multiply it by about 10-50 depending on how bad it is. Now, you would normally shake your leg cringe through the pain until the blood came back and your foot or feet are "awake" again. Well, that part doesn't happen. So, imagine trying to walk with the sensation you have when you are trying to shake your feet awake.

Needless to say, I am often a bit off kilter when I walk. I think it's easier to walk when they are numb, but trying to navigate curbs, steps, inclines, slippery surfaces, and the like is a challenge. I also have difficulty knowing when I'm injuring myself. I've more than once gotten home & taken off my shoe to find a sock soaked in blood due to some injury or another. I'm very prone to stubbing my toes, running into things, not realizing that when I dropped that heavy block on my foot it was actually a big deal, and the like. I can't walk in straight line, balance one foot, or stay standing with my head back & eyes closed...thus I could never pass a roadside drunk driving test even though I don't drink.

Left untreated, my feet could actually become gangrenous, the tissue would die, and my feet and leg would turn black, likely leading to amputation. Sounds gross and unlikely to happen, but right now these conditions are akin to my legs and more my feet being choked and they can barely breathe but it's not quite enough to actually kill them. Even treated, it hurts like major heck sometimes, makes it hard to walk, requires that I wear special shoes that aren't cute & feminine and certainly don't have a high heel, requires me to keep indoors and in a heated area as much as possible, makes it difficult to go anywhere due to air-conditioning (a constant in Southern California) which sets off bad flares, precludes me from walking long distances (shopping in Walmart is a bit$h), and other things too but this post is long enough. My hands and arms are affected as well & that's actually more of hindrance to my functioning, but that's another post. 

In terms of hiding, this one is visually easy to hide, who pays attention to your feet if you don't draw attention to them. Case in point, my husband was staying over at an apartment I had closer to work, he had brought his clothes for work but when he went to get dressed he realized that he had forgotten his dress shoes. All he had were his black suede sandals, those Birkenstock looking one with the 2 thick straps across that buckle. He dressed in his slacks & shirt and dark socks and put on the dark sandals. They kind of blended because it was black on black, but they were still the cork soled sandals. He actually made it through the whole day at work without anyone noticing his sandals, because people don't look at peoples feet, they look at their face (or any other part of the body they are trying to draw attention to, like cleavage or pretty or crazy hair).

Physically, this is pretty easy to hide. I walk funny sometimes but generally no one is there to notice. I get a shopping cart ALWAYS to have something to hold on to. I will drive from one end of a mall to the other rather than walk & since I have a much needed handicapped placard, I usually get a close parking spot.

Again, you wouldn't look at me & think she has a deadly disease. That's why it's called an "invisible" disease.

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Perspective From a Little Girl with Lupus

Sometimes in only takes a second to get a little perspective on your lot in life, or in this case about 2 minutes & 8 seconds. Regarding her lupus symptoms this little 8 year old girl quietly says

“I have pain in my arms and my legs and sometimes in my neck and my shoulders,” says Breanna. “If it's kinda like a good day, I can play outside…but if it's a bad day, I can't move my body."

So simply put. As another Lupie, I want to be able to play outside too.


As a second thought when seeing this, I can tell by looking at her that she has severe moon face from taking steroids (she's not fat with a big fat face if that's what you were thinking, look at her arms.). I can only imagine what it must be like on the playground. Kids can be vicious to other kids who have the slightest thing different about them. She has probably been teased relentlessly. It is nice to see that she got to be in the spotlight for a while!

School helps Westminster girl with lupus raise awareness

 

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My Lupus Buffalo Hump

Things I Hide about My Invisible Disease - Part 2 - The Buffalo Hump

Buffalo Gals, won't you come out tonight,
Come out tonight, Come out tonight,
Buffalo Gals, won't you come out tonight,
And dance by the light of the moon.

I don't think that song was about women with Lupus, but now that I've read all the lyrics I'm more inclined to think that it might have been. In any case, it's the tune that inevitably starts playing in my head when I think about this one particular aspect of having Lupus that I hide. Whereas you may have heard about the "butterfly" rash associated with Lupus, I bet you haven't heard about the Buffalo Hump! Doesn't that just sound beautiful and feminine?

I guess technically it's not a symptom of Lupus itself but it is a side-effect of the treatment. In particular steroids. Now when I talk about steroids, I'm not talking about anabolic steroids...the kind that "pump you up" and give you big muscles, and get you kicked out of baseball (usually after you've retired). The steroids I'm talking about are corticosteroids. Corticosteroids have an interesting history:

Corticosteroids: Once a Miracle "Cure"?

Corticosteroids or glucocorticoids, often just called "steroids", where once thought to be almost miraculous. In 1948, at the Mayo Clinic in Rochester, Minnesota a group of arthritis patients were given daily injections of a corticosteroid. The results were so striking and the improvement so dramatic that it was thought that the "cure" for arthritis had been discovered. However, as the use of corticosteroids expanded over the years, side effects emerged and it was realized that high doses given over prolonged periods of time turned steroids into "scare-oids". Patients were warned of the potential problems, the use of corticosteroids became more conservative, and some patients were so frightened of them they even declined treatment."

 Corticosteroids are used in Lupus patients to suppress the immune system (which has gone all wonky is attacking the bodies healthy cells and tissues) and to reduce inflammation. When the immune system is suppressed, surprise surprise you are more likely to get infections, all kinds of infections. Add a 4 year old in pre-school with 100 other little germ contaminated monsters running around her, breathing on her, playing with her, and then she comes home and jumps on Mommy and gives me a big slobbery kiss and hug with all those lovely kid germs...and me with no immune system. But I digress.

When I first took Prednisone (the most common steroid prescribed) I though it was a WONDER DRUG. I had been in bed for months, was horribly sick, anemic, basically having my initial flare of my diseases triggered by my pregnancy and child birth. This little white pill made it possible for me to actually get out of bed. It even gave me a little bit of energy, where I hadn't had enough to even take a shower. I had started reading the message boards about Lupus and read all of these horrible things about Prednisone and I couldn't understand what these people were talking about. I even posted about how helpful it had been and asked why was it so awful. I received a rush of responses regarding the side effects especially the long-term effects of steroid use and the list of side-effects is long everything from cataracts, diabetes, thinning of the skin, glaucoma, increased blood pressure, mood swings, edema (swelling due to water retention), suppressed adrenal gland hormone production, increased risk of infections, etc. etc.

The biggest short-term side-effect is weight gain and not just a few pounds. We are talking about people putting on 100 lbs. in 3 months (I didn't even believe that was possible, but some had pictures). Also, this weight gain is accompanied by a redistribution of fat. People develop what is called "moon face" because the fat settles in a circle around the face. You may have seen someone with this look because in some cases it is hard to miss, a HUGE ROUND face usually with round double chins. I thought this lady's diagram was helpful although honestly her moon face is not particularly bad.

So I was absolutely TERRIFIED when I started taking Prednisone that although I finally felt a little better, I was going to get incredibly FAT. I have never really been a thin person. I come from the hourglass figure kind of stock, lots of curves. That's the nice way of saying I can gain 10 lbs. by watching someone else eat something that looks tasty. I have always had to watch my weight and I've watched it go up & down & up & down & up & down. So naturally, I expected to be posting my own story of gaining 100 lbs. in 3 months and wondered to myself if my husband would divorce me if I got really fat (come on we all have these fears). He's from that naturally tall and thin stock who can eat the whole pie and not gain weight, who complains that he can't keep weight on, and has actually had those weight gainer shakes that add 2000 calories to your protein drink. It's completely mind boggling to me that these people exist & I'm married to one.

Anyway, by the grace of God I did not gain 100 lbs., I didn't have any major speedy weight gain. It is easier to gain weight, but when I'm sick I tend to stay in bed and not eat so it kind of evened itself out. I had put on weight slowly over the last few years but I attribute that more to being completely sedentary and not being able to exercise. I did however have a "redistribution of fat". So to continue with the things I hide about my invisible disease. I have a "buffalo hump".

What is a Buffalo Hump?

"Buffalo hump refers to a lump of fat that develops at the top of the back between the shoulders. It can arise from a variety of conditions that are characterized by an increase in cortisol or glucocorticoid (hormones produced by the adrenal gland) levels in the bloodstream. The most common cause of elevated cortisol levels is the use of oral corticosteroid drugs, which are prescribed to treat different conditions, including inflammatory diseases."
 Here is what my buffalo hump looks like currently:

The Buffalo Hump is the rounded area at the top of my back

The redistribution of fat also causes it to somewhat wrap around the the front sides, like a collar, leaving pads above my clavicle bones. I actually didn't know this until I was searching the web for this post and read up on it, so I don't have a good picture of myself. You can somewhat see the side pads rising up next to my bra strap, but here is a better example of what I'm talking about:

 Again, my buffalo hump is actually much improved. I am on the lowest dose of steroids that I've ever been on. I actually currently take 10mgs per day & previously have taken 70mgs (7x more & a VERY high dose). The buffalo hump is easily hidden with high back neck lines & long hair. This condition can be much worse, for example:

I don't think I could hide this one.
The buffalo hump should go away if I stop taking Prednisone, which is possible but unlikely, as that's what keeps my Lupus under some control. There is a possibility that the buffalo hump will never go away even if I stop taking steroids. I suppose I could have liposuction treatment, but I'll have to start a fund for that, it is difficult enough keeping up with the medical bills for my necessary treatment. Getting rid of the buffalo hump would really be treatment for my vanity at this point.

I know today is the last day of May and thus the last day of Lupus Awareness Month, but I have more things to post and pictures to show & I've decided I'm not going to stop just because I couldn't get it all in this one month. That is why I have started this in blog form.

If you didn't know, you are linked to my new blog Princess Lupus at  www.princesslupus.blogspot.com. I am by no means a blog wiz, so please bear with me as I try to get this blog going. Let me know if there are any problems that I need to fix.

I hope to see you for my next installment: Red, White, & Blue & Black.

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