Princess Lupus

No My Baby Doesn't Beat Me!

2011-09-26T13:58:00.000-07:00

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!

No My Husband Doesn't Beat Me!

2011-06-28T20:33:00.000-07:00

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.

Laughter Not Lupus

2011-06-10T13:19:00.000-07:00

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!

Am I A Green Tea Party Pooper?

2011-06-06T15:14:00.000-07:00

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?

My Patriotic Feet That I Can't Feel

2011-06-04T13:04:00.000-07:00

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.

Perspective From a Little Girl with Lupus

2011-06-03T11:21:00.000-07:00

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

My Lupus Buffalo Hump

2011-05-31T16:33:00.000-07:00

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.

Princess Lupus: Survey Reveals Lupus' Ability To Wreck Careers

2011-05-30T21:11:00.000-07:00

I can't believe they have to study this stuff, anyone who has Lupus just knows this to be true.

Survey Reveals Lupus' Ability To Wreak Careers

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

2011-05-27T17:59:00.000-07:00

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.

Trying to Live Like Everyone Else and Not Quite Making It-From February 16, 2011

2011-05-20T20:55:00.000-07:00

So yesterday (February 15, 2011) I convinced myself I could live a normal day "like everybody else" (we are all a little delusional sometimes).So I got myself together and got dressed and I got "the baby" Victoria (4 months) dressed and looking super cute (everybody looks in a stroller to check out the baby-so I wouldn't want to disappoint, she's so much fun to show off anyway).

I carefully put together her diaper bag/backpack making sure I had enough diapers, wipes, bottles, medicines, creams, pacifiers & clothes for all my "what ifs" and "just in cases"...you know "What if she has a blow out", "What if the car breaks down & we are stuck on the side of the freeway waiting for Triple A", or "What if a rogue tornado hits Santa Clarita and we are stuck in a storm drain for days until finally discovered by an urban rescue dog"...I've got to be prepared, I don't want to run out of diapers or pacifier wipes while we are stuck in the storm drain...I decided I'd better throw in another blanket...Just in case.

My "small" Ju Ju Be BFF Diaper Bag/Backpack, lightly packed for a 1 hour outing

I opened the garage door and packed everything into my SUV (getting that kick door stop thingy was a brilliant idea if I do say so myself - so the door stays open & I don't have to try and open it while carrying all this stuff let alone the baby). I took several trips to put everything in the car (or the "Beast" as my husband likes to call it): the stroller frame, the diaper bag, my purse after I transferred some necessities to the diaper bag so I didn't have to carry both when out and about (because I can't). I got together the 2 bottles of drinking water and 2 bottles of diet Snapple iced tea or Diet Fruit Punch flavored Kool-Aid that I have to carry with me everywhere (dry mouth, constant thirst, taking medications, and because I'm kinda addicted to the Kool-Aid), made sure I had my sweater or jacket even though it was in the 80's or higher (I have to carry a jacket or sweater everywhere as air conditioning and cold flashes require it or else my Raynaud's can be set off and left cold it could get out of control and very painful). Finally, I put the baby in her travel/car seat, figured out how to click all the latches of the 5 point restraint system, made sure she had her binkie, a clean pink burp cloth tucked in the side of her seat, got her favorite blankie, (Now the worst part) I carried her (in her car seat) out to the car. I managed to lift/hoist her up into the car seat base that is installed in the back seat, I heard all the right clicks (and hoped none of them were my vertebrae breaking or muscle snapping although it kinda felt that way). I double checked all of the above one more time, found my keys again, kicked the door stop up, locked the door, climbed into the SUV's driver side, got myself situated - water bottles in the right place, cell phone accessible, earpiece & bluetooth turned on, seat set at correct length for the shoes was wearing, made sure the Ipod was connected correctly and that it was still at the right place in my Audiobook, managed to get my seat belt fastened, made sure I had my handicapped parking placard, took whatever medication I'd forgotten to take or now need to take after doing all of this "getting ready" stuff, backed out of the garage, & then I sat and waited while I watched the garage door shut all the way. I have to watch the door close all the way, making sure the Boogie Man doesn't run and duck under the closing door at the last minute to hide, laying in wait until I come home. Did I mention I'm a bit obsessive compulsive - that's another discussion - I'll try not to digress.

Once everything was together, I went to a MOMS Club meeting. I dropped by Macy's just to pay my bill (because of course I had forgotten to pay it for so long that it was the last day & even if I paid it online like I wanted to, they still require a lead time of 3 days, so it would be late - come on Macy's this is the Internet age get up to speed, alas I was forced to go to the store to pay my bill so it would be on time). So for the second time that day (first was at MOMS Club meeting) I got out the stroller frame, figured out how to get it open...you know by pushing that big red button that says OPEN...why do they have to make this so hard?, got out the diaper bag, hooked the diaper bag to the stroller handles with my special "Mommy Hook", figured out how to unlatch the car seat from the base, hoisted the baby & car seat out of the Beast and put the car seat with her in it into the stroller frame while listening for the right clicks. I grabbed a big bottle of water and a bottle of iced tea, put my jacket in the bottom basket of the stroller, winced at the pain of bending down and up, made sure my purse was adequately hidden in my car, verified that I had remembered to hang up the handicapped parking placard (you can't drive with it hanging, but GOD forbid you forget to put it up and they ticket you, because it is THE MOST EXPENSIVE parking ticket there is), I smiled at my beautiful baby girl and headed off for the store JUST to pay my bill.

Victoria, Carseat, Diaper Bag, and Extra Quilt

Back to the sale, we are talking $6 pants & $4 shirts at Macy's and who could pass that up? I rationalized that I'd be stupid not to take advantage of such good prices. Moreover, I was sure I had coupons because we have a Macy's card and thus are inundated with coupons and Sale
brochures at least twice a week ($10 off a purchase of $50, $20 off a purchase of $100, and my favorite 20% off all of your purchases all day, pick your own sale day, but read the fine print because it excludes absolutely EVERYTHING you'd want to buy, or rather everything I'D want to buy: make-up, fragrances, Coach, Wacoal, and every other brand name I'd actually want to purchase which are very few because I really don't care about brand names...except for the excluded Coach & Wacoal)...but I digress.

I shop in bulk or at least I try on in bulk. I absolutely hate having to go in and out of a dressing room or worse having the sales lady ask me if I need another size. So I brought in 20-30 or more different things, some were the same item in various sizes (especially because I didn't know what size I wore anymore). I had to try on some items with 3 or 4 of the other items, mix and match you know, I had to see how it looks with everything else to know if it was worth buying. I went into the handicapped dressing room because I had my beautiful baby, stroller, diaper bag, and an entire closet full of clothes to try on. Alas, this "quick" trip to the store turned into a 2 hour or so fashion show for Victoria which included a feeding and diaper change and a cleaning for me too. Thank God for baby wipes and burp clothes to wash, blot and dry myself off....why do I sweat so much when I try on clothes? It's like a waterfall pouring from my brow. (I know, I know, GROSS Huh). I sweat more trying on clothes than I did when I could and would work out for an hour...but I digress.

Eventually, I paid my bill and bought the $6 pants in 4 different colors, a bunch of $4 shirts, some leggings and sweaters or sweater dresses to wear with them, I couldn't figure out which they were but since they were cute and cheap I didn't care. I left Macy's and then had to do the whole getting into the car routine again. Hoist the baby & car seat in, figure out how to close the stroller frame (there is no red CLOSE button, it requires a magical combination of pushing a different button while turning the middle part of the handle and then the frame magically folds up with one of the side metal rails clicking into the clasp with the big red OPEN button on it), I tried to unhook the diaper bag but I had already folded up the stroller so it wouldn't work, had to reopen it, unhook, reclose, etc. etc. etc. finally I managed to get everything all packed up again.

Next, I went to my doctor (still with the baby in tow), my psychologist or my "talk doctor" as my husband and I refer to her since he can't remember the difference between a psychologist (talk doctor) and a psychiatrist (gives you psyche drugs doctor). Yes, I took my baby to my
shrink. I'm sure that people must think I am suffering from post partum depression, not that I've ever seen very many people in the waiting room but in my OCD (Obsessive Compulsive Disordered) mind, I'm certain that every person is watching me carry my baby into the non-descript building that houses all kinds of offices, most of them not medical or psyche related at all, and they are assuming I have post partum depression as opposed to say...visiting my husband at work...that's just the way my mind works on some days - but I digress.

My appointment time is at the baby's nap time so she often just sleeps through the appointment and if not, she's just a really GOOD baby and hangs out smiling at me then smiling at the doctor. I think my doctor is much more interested in Victoria than what I have to say but that's alright with me. I really just need a place to rant and whine and someone to verify that I'm not crazy or validate my suspicions that a particular thought or reaction of mine or someone else's is in fact irrational or inappropriate. That's easier said than done, but she manages to do it and enjoys Victoria smiling at her at the same time. When the appointment ended I again repacked her and everything else back into the car.

Next, I picked up Alexandra (age 4 1/2 years) from school, here again I had to unpack the baby just to go in the door and walk to her class (I fought off the hoard of germ ridden children who were dying to cough and sneeze on poor little Victoria or at least touch her all over with their dirty little hands that haven't been washed through the 5 bathroom trips and the 6 snot wipes they've probably taken that day). I repacked the baby, stroller, and bag etc. I then got Alexandra in which entailed standing precariously on the side foot rail thingy (the name of which escapes me right now), leaning over her, and trying to get the seat belt fastened without being able to see the thing to fasten it into. I finally got it in and then hit my head on the roof of the SUV as I tried to get out of the car. Moreover, my back was killing me from being bent over her without any support. Why can't they make seat belt fastener attachments for people with arthritis, you know like the special can openers or jar openers or grasping helpers? (Note to self- Invention Idea: car seat belt fastener attachment thingies for people with arthritis) - but I digress.

I took Alexandra to buy some tights that she really needed (still with baby in tow) & she decided she wanted to get some shoes too, which she kind of needed. We drove to Payless and went through the whole unpacking baby ritual again. Alexandra can actually unfasten her seat belt herself, Thank God. We found a really cute pair of pink tights and then Alexandra headed to the shoes. Apparently, she has inherited my try on in bulk gene and had to try on 20 pairs of shoes, some the same shoe in different sizes. I think Alexandra's feet actually grew while she was trying on the shoes. After 2 dozen pairs and a number of emotional outbursts including crying, pouting, eye rolling, smiling, pissy face, laughing and the silent treatment. I finally got her to agree that today was just not the right day to find shoes at Payless but that we would look at other stores like Marshall's or TJ Maxx (I meant on a different day of course but failed to voice this out loud).

We left Payless with just the pair of pink tights which is what I intended to get her in the first place. As we walked out the door Alexandra saw the bright lights of Marshall's sparkling from across the giant parking lot, as the sun had gone down while we were in the store. Her face lit up and I could tell there would be yet another stop that I would have to make to avoid a complete child meltdown. But of course, I first had to pack up the baby, the stroller, the diaper bag, go through Alexandra's seat belt fastening torture, and then took more pain medication in desperation. I drove across the parking lot (thought to myself...this is so "LA Story" - the movie, if you haven't seen it, you should, it may be old but it's still totally relevant...I guess LA may change but the people who live there don't change much at all) and found the handicapped spot closest to the door wondering if I was going to make it even that far. I unpacked the baby, stroller etc. etc. etc. and corralled Alexandra to keep her from running in front of moving cars in the dark.

40 minutes to an hour later we left Marshall's with a pair of shoes, a pink and purple, super-soft, sleeping bag/nap bag (I'm not sure why she wanted this as she has a napping bag at school but I was too exhausted to argue and it was only $7, you have to pick your battles), and a Disney Princess themed umbrella which Alexandra insisted she needed so much so that she said she would pay for it with her own money (you know because it rains so much, like maybe 3 or 4 days a year here in Southern California) but she gets to choose what she wants to buy with her hard earned allowance and I explained the pros and cons of yet another umbrella when we already have 6 or so in our umbrellas stand-but I digress.

By the time I got home, I could no longer lift the baby, could barely stand let alone walk, & nearly fell asleep in my dinner plate that hubby was kind enough to make. He had to help/carry me upstairs and get me into my pajamas and into bed at 6:30 PM. I don't remember him kissing me good night, Alexandra coming in and kissing and hugging me good-night, my hubby coming to bed later and reading for a while, his alarm going off the next morning, him getting up, getting dressed & shaved, or hearing the rest of their morning routine, or him and Alexandra kissing me good morning and good-bye before they left for work and school.

I woke up to feed the baby and we both went back to sleep. When we woke up again was when I realized that the rest of my family was gone and I was upset because they didn't give me my morning kisses or even say good-bye. I called my husband to complain and he filled me in on everything I had apparently missed, I had my eyes open and made some responses but I have no recollection of anything at all.

It's 3:30 PM now and I'm still in my PJs, if not for the fact that the maids are coming, I'd still be in bed. Yes, we have maids or rather a maid service that comes once every 3 weeks to clean the house and do all of the things that I can't and a lot of things that I wouldn't do even if I could. It boggles my mind that they can come and make my whole house look nice and clean. Even they can't manage some of the piles, but they make them look more tidy and camouflaged somehow. I hate to be here when they come because I'm totally embarrassed by the state of our clutter especially with the new baby who's things have taken over our family room as that is where I take care of her during the day - but I digress.

I guess I used up all my spoons yesterday and stole some from today as well...just not sure how many days of spoons I used up. It's a good thing Victoria is such a good baby! She even lets me sleep in.

So to all of you out there who HATE a day of running errands, just remember there's some of us, like me:
who think running errands is a TREAT,
who DREAM of being able to do more than one thing every other day,
who WISH that they could plan ahead confident that they'll be able to attend whatever event they've RSVPd "Yes" for,
who would LOVE to not be considered a "flake" because sometimes they're forced to call and cancel things at the last minute because they "over did it" yesterday or 3 or 5 days ago and haven't recovered yet,

who are having a FLARE for no particular reason at all and have no idea how long it will last, or
who would be ECSTATIC to be able to say "Thursday is my day for running errands" and put that on the calendar knowing that it REALLY would be the day they would run errands.

To me running errands is an ACCOMPLISHMENT & one I may have to pay for for a long time afterwards.

That face can make anyone feel like they could do anything!

PS: You may be thinking "spoons?" what the heck is she talking about "spoons"?

At the time I wrote this, I had just read The Spoon Theory written by Christine Miserandino, a woman's attempt to explain to a normal personal what it is like to live with a disability or chronic illness like Lupus. It resonated with me at the time & I became a "spoon head". I still am, but I don't have the spoon Twibbon on my profile picture anymore. People were supposed to ask about the spoon on my head and nobody really did, so I figured I must just look like a strange gal who likes to wear silverware on her head. I wasn't the impression I wanted to make :-)

Musings From the Past-6/2009

2011-05-19T16:14:00.000-07:00

6/2009 update - Up & Down, Up & Down...that's the best way to describe my medical conditions...it's annoying. I never know if it's going to be a good day or not...my calendar revolves around doctor's appointments, my daughter is getting (if not already) too heavy for me to pick up), a simple trip to the Renaissance Faire (for which I rested up for for days, even spending the day before in bed) resulted in a tiring but fun day followed by a horrible reaction to the sun which went systemic. I was threatened with IV Infusion and spending time in the hospital. And now I'm NEVER allowed any prolonged or really ANY sun exposure :-(

Whine, Whine, Whine! LOL

This is me and my manservant/husband. My dress without the petticoat underneath. It looks so much better with the petticoat (by the way, I made that dress & my husband's shirt myself), my face looks so "moon faced" (aka: round/fat) here, a side effect of large doses of Prednisone. 24 hours after this picture was taken, I'd be flat on my back in bed with giant blisters all over my shoulders (the one place I forgot to put sunscreen and wasn't covered up). The sun caused a flare which went wildly systemic and I was down for about 3 weeks to a month...just from the darn sun...for gosh sakes, I live in California! I can't get away from the sun. The Faire was fun. I haven't been since, I'm too scared to go. My dress is somewhat on display on a dressmakers figure (a mannequin who's dimensions you can change). I think next to my wedding dress, I loved wearing this dress second, but with the huge petticoat to make the skirt fill out like a true Princess's should.

Musings from the Past-12/2008

2011-05-18T14:55:00.000-07:00

12/2008 update: The terrible 2's are sort of ending at 2 1/2...YAY! No more chemo...YAY! Recovering from a bout of Shingles attacking my trigeminal nerve (aka face and left eye)...yes chicken pox in my eye...BOO! Auto-immune diseases suck! Christmas was fun...made a dress for Alexandra...will post picture when energy is back.

(I wish shingles in my eye was this beautiful)

Taking a reprieve from chemo treatment for Mixed Connective Tissue Disease, Lupus with organ involvement, blah, blah, medical stuff, blah, blah. No I'm not nor will I be bald (you know you were wondering).

Ironically on disability from the disability insurance company I work for.

Trying to figure out what my 2 year old is saying and thinking of starting an educational movement to advise all those thinking of becoming parents or new parents that the "terrible 2's" really start at about 16 months...I'll let you know when they end.

Wondering when exactly it was that I ended up a grown up.