Tuesday, May 31, 2011

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.

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.

Friday, May 20, 2011

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

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 :-)

Thursday, May 19, 2011

Musings From the Past-6/2009

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.

Wednesday, May 18, 2011

Musings from the Past-12/2008

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.