Thursday, December 30, 2010

Christmas is over!

I thought about adding a frownie face after that title. Well, I did add one, but then I hit the backspace key and made it a smiley face instead.  And then I deleted that too, so that people wouldn't think I'm some pagan or something horrid like that.  As much as I loved Christmas and all the craziness that comes with it I was exhausted for most of my trip.  I did too much, as usual.

Also as usual, my granddaughterly guilt got the best of me and I worked hard to snuff it while I was in town. Mama and Papa aren't doing much cooking anymore, so I try to make a ton of healthy meals while I'm there so they can have some choices in the freezer. I made Senegalese peanut soup, chicken divan casserole, Italian beef (or turkey) and polenta casserole, baked ziti, a huge batch of meat sauce, butternut squash casserole, salsa and black bean soup, crockpot minestrone, and a couple loaves of harvest bread.

A couple of my triumphs.
I'm really not crazy. I've been tested.
Other than that, I was busy hanging out with kiddos and taking way too many pictures.  Here are a few of my favorites:

Holy cuteness.  This Christmas just had to go and kick every other Christmas I have ever had in the groin.  Children make the holidays so much better.  Their excitement and crazy antics made even my favorite childhood Christmas (the year I got the TI-83 plus graphing calculator... yeah I'm a nerd, why do you ask?) seem just silly.  Watching those kiddos grow up is going to keep me young, I think.  :-D

It was a really great visit.  I also went out to a fondue dinner with besties Cassie and Elisha (so much easier than buying presents for each other!) and then went out to the pub to see other friends as well.  For several days my calorie count lingered at around 2100 calories... on Christmas it was at 2700.  I'm not proud, but at least I was honest with myself.  How many people actually count points or calories during the holidays?  This is quite difficult at the in-law's home where the wine seems to just magically appear in your glass when you could have sworn you just finished it a second ago...

Our trip was just about the perfect length of time- our families were just starting to drive us crazy (kidding!).  But, we were missing our bed at home and I had finally caved in and started taking steroids to calm my lupus and it was making me feel wonky.  It was around time to take our leave at day seven. In fact, it was actually cut a tiny bit short by a winter storm warning the night before we were due to leave.  We packed it up in record time and missed ALL of the storm.  We were very thankful to have such great weather and road conditions on the drive up and back.  I was not prepared to have huge anxiety attacks (at least not on the ride up to Spokane... on my way back I brought extra "juice", a tip from my awesome MIL!).

Now that Christmas is over we have to get back on track.  All the laundry is clean (just not hung up), we've discussed tearing down the tree (frownie face), and I purchased many of the ingredients for my upcoming Food Lover's Cleanse (more to come!).  In a day or so I'll go over the rest of my plans for the new year.... it's time to focus on Kara!

I hope everyone had a great holiday!  
Celebrate SAFELY tomorrow night and have a Happy New Year!

Saturday, December 18, 2010

It's beginning to look a lot like Christmas!

The semester is officially over with the exception of the silly requirement that I need to snail mail a copy of my thesis to my advisor. I made it clear in our last meeting that my draft would be much more like a rough outline, but he still insists that I mail it instead of emailing it. Sigh.
I'm so thankful to be finished for the semester. I've been sleeping in and trying to take it east. However, my joints seem to get pissed off due to the most ridiculous things. I did the dishes two days ago and I still can't type (what I'm currently doing is using maybe four fingers, total). My knees are also killing me. This could have been caused by wearing my shapeups for too long of a time or wrapping presents on the floor yesterday. Regardless, it's silly.
But, work needs to be done before we go to Spokane. I'll have to find the strength somewhere. Speaking of which, I went in to be reevaluated at physical therapy. It's this stupid deal that the insurance people want. They measure my range and my strength, blah blah blah. Not surprisingly, I've gotten worse. I've lost so much strength in the past year and a half. I feel so weak... constantly. My doctor asks me if it's because of my lupus or because of grad school that I don't exercise. My answer is "yes?" Next semester will be better. Stay tuned.
Since it's obvious that my thesis won't be worked on until after a paraffin wax treatment, I guess I should go wrap more presents. Pray for my knees.

Friday, December 3, 2010

thanks, lupus!

It's thirty minutes until class starts. I'm blogging on my phone-how hip and techie of me.For the past week I've been waKing up more tired than when I laid my head down the night before. I thought it was the vicodin at first, but no-just general fatigue.
I was pondering on my way to school what I would write on that page of my thesis where I get to thank people. Obviously, my husband is first on that list. His patience and understanding and his support in my graduate school quest has been amazing. I wouldn't be here today without him. My grandparents are going to be on that page as well-they don't understand my desire to be a social worker but they still listen to me rant about school and clients with interest. My thesis is on sexuality, a taboo topic to their generation, but they have never spoke a bad word about my topic or my passion for advocating for the LGBTQ population. I'm very fortunate.
But to my main point: Would it be weird to thank lupus? I am so strong because of my disease. People are struggling in this semester of grad school. A cold or a difficult paper brings other students to their knees. Their minds wander to quiting or failure. Never for me. I feel like I can accomplish anything. Thank you, lupus. I would be quite the wimp without you.
So... Thoughts? Should I give a portion of a page to recognizing how lupus has strengthened me?

Wednesday, November 24, 2010

Dear sciatica,

Dear sciatica,
I was just bragging today how you've stopped bugging me since I've begun taking the gabapentin again. Then you had to go and damn near ruin my enjoyment of the newest Harry Potter movie with your nonsense. Now I have to take a vicodin instead of enjoying the nice bottle of wine my husband opened tonight.
I hate you.

Sunday, November 21, 2010

Giving thanks a bit early

I’m very fortunate.  I believe I state that in around half of my blog posts.  I got my blood work back and met with my rheumatologist on Thursday.  No anemia and no kidney damage.  My lupus is obviously very rampant- I’ve been feeling it for two months now.  I have 21 days left in the semester and four days of classes left.  But I’m going to make it.
My friend is less fortunate right now.  She’s been my vision of what the future will be.  Her lupus was bad when she was my age but things have been wonderful for her recently.  She was even thinking about having a baby soon.  Her last blood test wasn’t as great as mine.
I’m keeping her in my thoughts as I sit in class and stare at her empty seat.  This semester has  been difficult.  Professors admit that the Fall semester in the second year of grad school is the hardest.  Everyone is interning three days a week, there are classes to attend, and most of us are working to write our thesis.  Then, of course, there’s life.  I was speaking t another MSW student yesterday about how I realized with dread tat Christmas as quickly approaching.  I have to think of presents, of cookies, and of how to navigate the drama of splitting times between two families and my friends.  Absolute dread.
One aspect of my lupus that I’m focusing on is the sciatica and migraines I’ve been suffering through for this semester.  I had finally reached my breaking point.  Almost daily my leg would hurt from the middle of my ass down to my toes.  And it was making me tired.  So, I’ve started Gabapentin again.  I was on it when my sciatica first started a few years ago.  It seems to be working- at least today my sciatic pain is just a twinge.  It’s nice to see a positive change.
Another positive note: I’m officially losing weight.  My doctor freaked for a few minutes- thinking it was a drug side effect or my lupus or maybe I just wasn’t eating.  I informed him of my diet and also told him that I haven’t been able to exercise.  He then asked me with a very serious face if I couldn’t exercise due to pain or due to time.  I told him both, and then laughed a bit.
If you don’t laugh, you’ll cry.  Right?

Tuesday, November 16, 2010

Holy crap- it's been a month!

It's amazing how quickly my stress level skyrocketed after Halloween.  My thesis advisor has made it clear that I need to have a substantial amount of work done in my Literature Review in order for it to count as a draft.  That, coupled with the Human Subjects Application, regular papers and projects, my internship, and life... and I've been super stressed.  And you know hat happens when I get stressed....
....flares.  Lots of them.  I've been trying to put on my big girl panties and take my steroids when the pain starts interfering with my work or school.  But it seems like by the third day of being on the steroids I start feeling like I'm getting a normal-person cold.  So, then I go off of the steroids.  I have one or two good days after that and then the whole thing starts all over again.  It's pretty exhausting. And frustrating.
My big bro started a blog yesterday on his journey to law school, which made me think I should start writing again.  It's definitely therapeutic.  With these last few weeks I need a bit of therapy.
For now I have to go work on an editorial piece about CPS.  I plan to write later this week about how my diet is coming along.  Also, I have a doc appointment on Thursday.  Cross your fingers for no kidney damage!

Thursday, October 21, 2010


Since I'm already distracted from my homework I figured I might as well type just a little bit here.  Life has been good.... a bit achey, but good.
What has me distracted you may ask?   Oh... nothing.  Just Halloween.  AND CHEESE!
The party is around one week away.  I'm getting nervous.  I have at least ten people coming.  I have a costume (Joan of Arc, now).  And I've started buying decorations.  And today I made cheese puffs.
These cheese puffs are from the Pioneer Woman collection.  I liked her description of these little nibbles.  Bake in the day (before I was born, for sure), appetizers for parties were easy.  Nothing fancy.  No crazy ingredients you couldn't find or pronounce.  These cheese puffs have cheddar, Dijon mustard, cream cheese, butter, garlic, shallot, and egg whites.  Then you dip French bread cubes into this delicious fondue-like sauce.  Then you bake them.
Needless to say, they are VERY good for you.  Especially the soul part of you.
The recipe can be found here. I'm not going to post a picture for fear of infringing on copyright stuff.
The best part is that you can freeze them, uncooked, and then throw them on a cookie sheet the night of the party.  It's going to be a big help.  The meatballs I'll be making are a crockpot food (easy), which just leaves me with my stuffed mushrooms and sangria.
Before the day comes we need to clean.  Big time.  I also have this great plan of taking all of our condiments and such out of the fridge and hiding them in a cooler in the closet.  To make room for beer.  Thoughts?  It's just a small fridge and I'd like to be able to keep beverages cold.
The other thing on our to-do list is to buy a shelf to go behind the couch.  That means, off to Ikea! The shelf, which we've been wanting for awhile, will make more space for food and such.
Yes, the shelves are irregular.  Because we're hip like that.

But before the party I REALLY should work on my homework.  I have class that Sunday and I'm betting that I may not be in the homework mood the day after the party.  Probably more-so in the cleaning and sleeping in mood.

Sunday, October 17, 2010

I'm very lucky

I felt mostly terrible the entire weekend, but I had my Kevin.  :)  When my hands were aching terribly he did the dishes for me.  When I had a migraine while we were out and about and I needed to settle my stomach with some food he turned into a McDonalds and ordered me a McChicken.  And when I flipped out because it appeared that the pharmacy had given me the wrong medicine, he affirmed my feelings.  I'm blessed to have such an amazing husband.

The medicine I'm speaking of is my birth control.  I'm finally throwing in the town with these once-monthly periods.  I switched for peace-of-mind, and instead got terrible flares, cramps, and backaches.  Kevin and I talked over our options and decided that it wouldn't do for me to be miserable for a week every month.  So, I'm going back on Jolessa.  As for the peace-of-mind, we've agreed to keep pregnancy tests on-hand for any time I feel the slightest bit funny.  Yes, I'm paranoid.  But it's not baby-time.

I spent some time talking to my friend Maria about this.  She also has a diagnosis and it's just fantastic to have someone to compare treatments and symptoms with.  We had a discussion about how we can't have "surprises".   We sometimes take some pretty hardcore meds that would be pretty detrimental to a fetus.  Vicodin, steroids, blood thinners, etc... not to mention my nightly glass(es) of wine.  I think the closer we get to actually thinking about starting our family the more worried I get that it will happen before we're ready.  I'm hoping to be able to make my body a bit stronger before that time comes and to have more support close-by in case I get put on bed rest, as well as for after the baby is born for childcare.

Babies are stressful, even before you have them!  Yikes.

Wednesday, October 13, 2010

Thoughts for the evening.

1.) If you are hoping to dip your aching hands into paraffin wax after going out for dinner, make sure the wax bath is turned up past simply "warm".

2.) If upon arriving home you find that your wax is not actually melted, don't apply pressure to the "squishy wax" for fun/investigative purposes.  It will go terribly wrong. Your finger will go through the squishy wax into liquid wax and you'll splash wax all over the counter.  Then your husband will HAVE to make a smart-ass remark.  Because that's just the way he is.

....but hey, he took me out for a nice meal tonight.  I guess I can let this one go.

Also, I slept for almost 12 hours last night! That's the way to attach a lupus flare head on!

Let's go see if I can do it again.  The crazy sleep, not the splashing wax everywhere. I'm sure I could do that again.  I'm very good.

Good night everyone!

Tuesday, October 12, 2010

Okay, NOW it's the first flare of the school year.

We've passed aching and moved towards the kind of pain that makes me bitchy.
It's that whole first day of my period BS.  Extra estrogen.  Etc.
So, I'm back at home after a long day of work. Comfy pants.  Red wine. Great husband who picked me up a hamburger with extra pickles (a common craving for me on the first day of my period).  Life can't be too bad.
Now we're watching Shaun of the Dead and I'm contemplating taking a pre-bedtime nap.


Friday, October 8, 2010

Quick post!

Let me start by saying that I wrote this entire post yesterday.  Then something happened and it all went bye-bye.   It was supposed to be quick because I had a ton of homework to do before class today.  So then it went away and I didn't have time to re-write it.

Now it's Friday and I'm taking the evening to relax before I go crazy on the huge pile of homework that needs to be done.  So, here we go again.

The big flare that I thought was coming never came.  I was a bit achy and tired but functioning was still possible. I went to physical therapy yesterday and I had a decent workout.  Like I said, I was tired, but I still felt that I had accomplished something by getting into the pool and doing some work with the "dumbbells".

You know... I think I'm going to go ahead and say it: I'm proud of myself.  I do what I can to stay in shape.  I've been rockin' my shape up shoes and walking extra whenever possible. I've also been consistently counting calories on my new smart phone.  I'm averaging between 1500 and 1700 a day.  I think if I keep it up I may continue to lose small amounts of weight at a time. Maybe I'll be able to fit into those dress pants I bought last year before the car accident.  (One can always hope, right?)

Also, I'm pleased to announce that Mr. Cyst has left the building!  Yay!  Sometimes I think going on the Lupus Foundation message boards makes you a bit paranoid.  Tons of women seem to have polycystic ovarian syndrome... or whatever it's called.  A couple women have had to have their ovaries removed.  It's frightening.  Anywho, I'm glad that drama is over with.

Did I mention that we've decided to throw a Halloween party?  It's basically a terrible idea, but I've already sent out the Evite.  I'll have to clean the house and everything.  Kevin and I are going to dress up, too!  He's going to be a magician and I'm going to be his rabbit.  Cassie says it's going to be adorable.  I usually trust her on all things costume-related.  We're going to make some sangria and some appetizers.  I hope it goes well.  I've got a few "yes" RSVPs and a couple "maybe" responses.  Cross your fingers for a successful and not-overcrowded party.

Weekend plans: Cleaning, homework, class on Sunday (boo), bicycling (hopefully), and Kevin owes me some frozen yogurt (for not eating the candy at work).

Sunday, October 3, 2010

First flare of the new school year?

I'm achy today.  I was achy last night, too. It could just be a bad day, but I believe I've been feeling this come on all week- lots. of fatigue, even when I got a full night of sleep.jn  Probably started when I got hit by that idiot on the trail.  Normally I can tell what my trigger is for the flare.  This time that's the only thing I can think of.
My plan?  More sleep, of course!

Thursday, September 30, 2010

Ugh, my back.

"On your left!"
That's what bicyclists are supposed to say when they pass you on the trail.
However, the meat-head who was zooming along with headphones and no helmet didn't know this rule.
Don helped out my back a little today but my neck still hurts.
I'm cranky. And my social policy homework is intimidating.

Friday, September 24, 2010


Man, I've been bitching a lot lately, haven't I?
I apologize.
But seriously, I'm going to bitch about my sciatica now, mmmkay?
I've been having that "twinge" in my butt for a bit over a day.  Last night it hit around a nine on the pain scale- I could still walk but I was whimpering and sobbing.  Not my most bad-ass moment.  I managed to get some sleep.  (Thanks, Vicodin!) However, I woke up still in pain, still walking funny, and dreading those desks at school.  I seriously considered champing it.  I am a bad-ass... regardless of crying into my pillow at midnight.

In the end I thought I could miss just this one.  And hey- I could use my day off to call my Rheumy!
Oh yeah... he's off on Fridays.  Rich bastard.  Social Workers will never probably never be able to have leisurely three day weekends every week.  Except for furlough Fridays... but don't even get me started on those...
There I go digressing again. Anyway- Dr. Mansour was off today.  I thought maybe my PT (Don) could work some magic.  He was entirely booked up.  I gritted my teeth and called my primary.
Quick background on my relationship with her:

  • In order to see specialists (Rheumies, for example) you need a referral.
  • Referrals come from Primary Physicians. Sigh.
  • She's HUGE on vaccines.  It's quite annoying to remind her, yearly, that I don't do the flu shot.
  • She's big on telling me about my diseases.  This drives me BONKERS. "You know, with lupus there's increased sensitivity to the sunlight so you should always wear sunscreen and just avoid the sun as much as possible."  No kidding?!  Thanks for the FYI, Dr. Obvious. "People with lupus often experience fatigue as a part of their condition." OMG.  Is this why I'm so tired all the time?! Thanks for the insight!
I should have gone to med school.
Wow, there goes my bitching again...

So, I don't really enjoy going to see her. Today she was helpful, though.  She gave me a shot of something that seemingly has reduced my pain down to around a 4.  However, this shot was in my ass.  For the first hour after receiving the shot I couldn't tell if the nerve pinching hurt more or if the injection site did.  

But, after a three hour nap I think I'm less cranky about the whole shot-in-the-ass thing.  I'm hopeful that Cassie and I will still be able to go wine tasting and apple picking tomorrow.  Apple Hill should be beautiful.  I'm taking my camera.  

I guess I should just be happy that I found something that made me feel a little better.  But seriously, the injection site still hurts.  


Have a great weekend everyone!  

My bed buddy today...

Thursday, September 23, 2010


Yeah, that's a mouthful.
For most of today and yesterday I've been having chest pain.  I didn't know the name of it until today.  My doctor just told me that there's interconnective tissues all throughout your body.  This includes the place where your rib cage connects to your sternum. Lupus attacks those tissues... add it up.   
I think especially for folks with a history of asthma- having difficulty breathing is pretty scary.  If you also happen to have knowledge of some of the pretty bad things that lupus can do (fluid in your heart, lungs) then the feeling of weight on your chest is terrifying.
I remember calling Dr. Mansour the first time it happened last year.  I went into this big long monologue about how I know it's not an asthma attack, but I took my inhaler anyway and it didn't work and now I'm jittery and then I thought maybe I was having an anxiety attack but I wasn't worried about anything but now I'm REALLY worried and OH MY GOD AM I HAVING A HEART ATTACK?!
Dr. Mansour's response: "Does the pain go down your arm?"
Me: "No... IS THAT BAD?!"
Dr. Mansour:  "You're fine, but if it persists for longer than a day call me back".
                    .......Whoops.  Probably shoulda called him today.
I'll do it tomorrow morning.  I just thought I would inform you all about this very-hard-to-pronounce perk that comes with my lupus.

Be jealous.  

Have a good night, everyone!

Ah, PT...

Now, I can't state that I'm at 100% after physical therapy today, but I can tell it helped.  I felt like a bit dork just floating in the pool and moving my legs around, but at the same time I think I needed to feel weightless for some time.
Mary (No Don for me today) worked on me before the pool.  Whatever she did, the sciatic pain I was feeling this morning is no longer shooting down my leg, making walking difficult.

I took advantage of this moment of feeling-like-I-could-walk to go to Target.  Ever since grad school, lupus, etc., my nice NY&Co pants I bought for court early last year are a bit... *clears throat*... snug. So, I needed to rectify that.  On Sunday I have to go buy some new black slip-ons and maybe some new homevisit shoes.  I feel like people have been staring at my black tennis shoes...  And then something happened to the buttons on my other ones...

That something's name is Spartacus.

It's always fun to go buy new work shoes, though:
"Uh, yes, saleslady?  I need some sort of black shoes that are comfortable, easy to run in at a moments notice, totally closed-toed because I may be stepping in feces, but still stylish.  Preferably I could wear them to court too, hopefully without setting off any metal detectors...  Oh, and maybe a bit cheap, too- just in case I need to burn them instead of trying to clean them off.  Do you have anything like that?"
I think I'm going to check out Payless first.  If I find good homevisit/office shoes there I'll let myself buy some cuter flats for court and date nights.

I need to get to my homework, though.... preferably before I fall asleep next to this adorable dog who is napping on the bed.  Could YOU resist that face?  Not a chance!

Wednesday, September 22, 2010

Darn my ambition!

I had this strange desire to go to the gym on Monday.  I got home around six and Kevin insisted that he could finish up dinner and that I should take my homework and chill out on the elliptical awhile.

....sooo I went....

               .....guess how that went...

It was actually great.  Well, the gym was crowded and full of the "professional" crowd (color coordinated gym clothes, using their blackberries in between sets, full-on makeup, lots of flirting.... isn't there anywhere else to meet people after work?) so I couldn't get the arc trainer I wanted.  Also, I'm the kind of person who likes a machine in the corner away from judgmental stares or people who happen to glance at my textbooks (Sexual Abuse in Nine North American Cultures was a fantastic gym read but I think people thought I was weird).  I didn't get an arc trainer and I was right next to the walkway.  Oh, well.

I worked up a great sweat, regardless.  I felt really proud of myself for conquering that voice in my head that told me that I had too many responsibilities to take time off to go to the gym.  Kevin was actually the one to do the conquering, but whatever.  I love him for it.  He even did the dishes.

Poor guy has to choose between his wife getting fat and doing the dishes.  I think grad school has been harder on him than me.

Ever since then my hips have been SCREAMING at me.  Tonight it's hard to put weight on my right side.
Goddamn husband forcing me to go to the gym.
.... I kid, I kid!
But seriously, I think I see a happy pill in my future.

I just can't believe that I went to the gym on Monday and I'm still suffering.  All I as trying to do was be healthy.  A less awesome person would be bitter about this.

Thankfully, I have many things that are keeping me going today.  I have TWO cases at work that I'm a part of.  I wish I could jump in more, but a bureaucracy is a difficult machine to work in.  I'm still not positive how all the cogs work.  Also, Kevin and I decided that if I ignore the candy dish at work 2/3 of the days I'm there in a month then we'll go to FroYo, my new favorite frozen yogurt place.  Nothing like rewarding yourself for not eating candy by eating delicious fat-free frozen yogurt.
                                 .....with crushed oreos on top.
And Cassie comes to town on Friday!  We're going to make applesauce, apple galette, and harvest cake (for the G-parents.  Plus, wine.

We like wine.  :-D

Saturday, September 18, 2010

Just a quick post.

I haven't written in a week.  Such is the life of a socialworkergradstudentwife.
I was planning on posting due to the arrival of my monthly friend (who I haven't actually seen in months).  I, frankly, was not expecting it, but it's always nice to be reminded that I'm not quite going to be a mother just yet.  I also was not expecting how different my period and its symptoms would be on this new birth control pill.  It used to be that I would have back pain and cramps within the first couple hours of my period making its debut.  At the most, I would go to sleep with pain and wake up feeling fine.  Not anymore, it would appear.  My back was constantly aching.  It was a ton of fun.
This is what made physical therapy yesterday so awesomful (awesome and awful, if you're new).  All that aching had done some major damage, it appeared.  Don tortured me for a good half hour.  I was swearing, near-crying, squirming, and I damn near kicked Don in the head while he worked his magic on my lower back and my sciatic nerve.  After I recovered from nearly dying I got a great workout in the pool.
....and then I went to the movies and had a sushi dinner with friends and ruined all that lovely progress I made.
Oh well.
But, I have decided that I will continue going to PT once a week on Thursdays.  If I tell myself it's a medical appointment I won't break it for homework.  If I pencil in "workout" instead I will certainly end up reading about Schizophrenia instead.
...which is what I'm supposed be doing now.
Maybe I'll do better this week.  I'll walk the dog in the evenings, give myself hand treatments in the warm paraffin wax, ignore the candy dish at work.... I'll be awesome!  Or I could be just as "fly by the seat of my pants" as I always am.

....BTW, best bud Cassie comes in on Friday.  I'm hoping for some wine tasting, a picnic, some cooking, and some time apart from Kevin.  I love my husband, but you all know what I mean.  :)

Saturday, September 11, 2010

Mr. Cyst Update

He's still there... not hurting all the time... but he lurks.  And then he surprises me with occasional bursts of pain.  Or, he ruins what was proving to be a very romantic evening.  I'll leave the details at that.

Ultrasound in around 4 weeks.

Sexy Torture Devices

Last night I went to a semi-formal event at Intel.  It was "Vegas Night" and they had blackjack, poker, craps, roulette, huge shrimps and cake.  Those shrimps were delicious.  And the cocktail sauce.  Mmmmm.

I digress.

Kevin and I took "semi-formal" literally and so I wore my LBD (Little Black Dress) and heels while Kevin wore his suit.  As usual, there were some assholes (pardon my language) who showed up in jeans, but we weren't the most dressed up people either.  In fact, we looked pretty darn good.  Was it worth the two hours of prep time (shower, blow-dry, straighten, makeup, get dressed)?  Probably not.  I'm very fortunate to have married a man who loves how I dress and thinks I'm beautiful with the bare minimum of makeup (Mascara. MAYBE powder foundation.). What made it REALLY worth is was that Kevin bought me an In-N-Out burger on the way home.  He even remembered to ask for extra pickles.  Be still my heart.  :)

The point of this post, however, was to discuss my sexy torture devices.  I bought them for Brian and Maggie's Wedding to go with a hot little dress I had found.  I could go into the horror story about that dress and the wedding but then I'd be digressing again...

They are gladiator style and they buckle around the ankle.  They're hot.  And they're high.  And they hurt.  It wasn't too bad when we were standing in one spot near the blackjack tables last night, but as we walked around to get food or even to leave it was taking serious concentration to not whimper with each step.  The balls of my feet were dying!

And, as I took them off and crawled into bed last night I noticed immediate pain in both of my hips and my lower back.  That was really amazing.  I probably only wore those sexy torture devices for around 2 hours, but here I am, paying for it today.

In conclusion?  Next semi formal event I'm going shopping for some pretty flats.

Tuesday, September 7, 2010

Here we go!

School officially started last week and I survived it.

Mr. Cyst has decided to calm down a bit.  He still hurts occasionally but he's not interfering with too much of my activities.  I wanted too go for a bike ride this weekend but my PT, Don, told me to give it another week.  I've also been opiate-free since my last post.  Woohoo!

My classes are on Fridays from 9-3.  I took healthy snacks and a low-cal lunch and I survived the day without eating something that made me feel bad about myself.  During my second class we were given a break and I went to Java City and treated myself to an iced green tea.  Instead of my usual Splenda sweetener, I asked for one pump of passionfruit flavoring.  It was quite delicious and probably only added around 20 calories to my drink.  Yes, it's probably made from HFCS (High Fructose Corn Syrup) but you have to remember to live a little.  Also, I'm not sure they make flavored syrups with natural cane sugar.  Anyone know?

My only issues with my education versus my health was that my sciatic nerve gets pinched really easily in those damn desks.  It makes me cranky.  This was really a factor in the 2nd class of the day (12-3 pm), where the professor insisted that we be "mindful" of how our actions affect the class and the discussion.  I couldn't figure out how the class would be affected by my standing up and rubbing my arse... so I just sat there and tried to ignore it.  :-D

This weekend was spent trying to enjoy the last weekend that I won't be super bogged down with papers and studying.  Kevin and I just enjoyed each others' company and toasted our final bottle of Korbel champagne to me being in my final year of grad school. Last night was our Fantasy Football draft for our League.  My brothers, Brian and David, have joined and I'm really looking forward to sharing this experience with them.  I feel like I don't talk to them enough and the football season allows for lots of smack-talking.  I also hope I beat them, but that's less my sisterly side and more my competitive bitch showing through. I'm not perfect.

I begin my internship tomorrow, one day later than everyone else due to some confusion around who my supervisor is.  I'm using the day for homework and thesis. I've already made great progress on the questionnaire for my project and now that I have a freshly brewed glass of iced coffee I think it's time to move on to my readings for practice class.  The book is called Clinical assessment and diagnosis in Social work practice by Corcoran & Walsh.  The title suggests I'll be bored to death.  We'll see.

I can survive just one more year of school.  Just two semesters.  I can do this.



Thursday, September 2, 2010

Going on the offensive!

Mostly I'm just attempting to figure out how to make these first weeks of school and internship work.  It's not like I'm going on the offensive against Mr. Cyst.  I'd love to do that, but I don't think that's an option. 
I went to campus yesterday to do some research and go to a couple meetings.  In between the idiots in the parking garage, walking all over campus, and dealing with just two items on my to-do list I was exhausted by two o'clock.  The walk back to my car with my backpack was brutal- my lower back was killing me and my ovary was causing me to hunch over like an old lady.  The drive home was worse- my heavy eyelids were causing very real thoughts of dying in a fiery car crash to pop into my head.  Did I mention that I only took ibuprofen that morning?
I came home, popped a vicodin, and immediately passed out for a three hour nap with Spartacus.  Did I mention one of the BEST things about my dog?  Even if he's been napping all day it seems like he'll gladly join you on the bed for another round of Z's.  It's awesome. 
Then in the evening I decided to forgo pain killers at bed time for a couple glasses of wine.  Not a super great idea.  I could barely fall asleep and when I did I awoke often.
So, as far as going on the offensive I'm not doing too well today.  I'm already exhausted.  The only walking I have to do is at the grocery store.  Then I'll come back home and work on my Human Subjects application for my thesis. 
I'm also going to put in a call to my doc to see when I should start exercising again.  It seems my pain is going to stay awhile and I'm wondering if I could go for a bike ride and just ignore it.

Monday, August 30, 2010

Oh, Ovaries...

I'm sitting up in bed, surrounded by things that are supposed to make me feel better: A good book, chicken noodle soup, crackers, ginger, popcorn, Norco, and my cell phone.  Since Friday I've been a bit under the weather.
It started out with a sharp, almost cramp-like pain in one distinct spot in my lower abdomen when I would pee.  Usually it would go away after I finished up.  Later that night the pain was continuous.  I asked Kevin to pick up some pure cranberry juice, thinking maybe it was my kidney (even though I'd never had a UTI with pain in the front, before).  The next day was pretty normal but with pain.  I went to the gym and spent a half hour on the arch trainer.  This hurt, but I ignored it.  I spent most of the afternoon just chilling on the couch with a general condition of feeling like poo.  Finally, after some WebMD searching, I became a bit afraid that it may be my appendix which was hurting.  We went to Urgent Care first (who told us it looked like my appendix but that I should go to the ER) and they weren't super helpful, aside from giving me a wheel chair ride over to the hospital.
Anywho, after a CT and an ultrasound (the kind where they stick the wand up your woowoo... ouch) they finally ruled out my appendix and found a nice little (big) cyst on my right ovary.  It was the kind that bled a little bit.  Well, I was sent home with a prescription for Norco (Basically, two Vicodins) and ibuprofen and told to get an ultrasound in six weeks.
Did I mention I've puked three times since then?  We were in the ER from around 3 pm- Midnight.  No food.  I was getting a bit hangry.  After standing up to get dressed and almost passing out I sent Kevin to find a vending machine.  I needed a candy bar- fast.  All was fine and dandy until I got in the car.  Yikes.  We finally found me a burger to take home.
At home I first puked up the candy bar and the fries, then I told myself that I'm sure that puking "helped" and that I could eat my burger.  No bueno.
Then yesterday my diet consisted on popcorn and crackers until dinner, when I decided I could handle some Mediterranen Chicken Delit pizza from Papa Murphy's.  I was sooo hungry.  I bet I would have been fine, except I went for a third slice.  That one did me in.  :(
So today I'm being extra careful.  I'm hoping to be able to eat a turkey burger this evening.  Cross your fingers for me!
Also- did I mention how FABULOUS Kevin is?  I'm very lucky to have married a man who can take care of me when I'm sick.  He doesn't handle the vomit too well, but he can at least take my puke bucket out to the dumpster. 
A big shout out to Cassie, too, who brought me the book Her Fearful Symmetry by Audrey Niffenegger (the author of the Time Traveler's Wife) from Powell's.  I didn't think I would have time to read it back when I was feeliig well.  Now I'm overrun with free time.
School starts on Friday, but I have a couple meetings I have to go to on Wednesday.  Here's hoping I can walk easily by then!

Wednesday, August 25, 2010


I've been trying to use spare half hours in my days to catch a bit more of a workout. This started up last week with my impromptu trip to the gym after my brain got fried while thesisizing.
I've now twice done the P90X workout since then. I love how much it makes me sweat- plus I get an arm and leg workout. It's very soothing. I allowed myself some yoga after spending all day in a training for a program I already know how to use (halfway, but still... it was terribly boring).
I noticed today that I was slipping a lot- especially during downward dog. I wiped the mat, I turned it over, I wiped myself off- nothing worked. I plan on moving my mat to a new spread of carpet tomorrow. Maybe our new area rug is too squishy. Frankly, I kinda like the squishyness- I tell myself it's easier on my joints. While researching this issue I came across these:

Note the super cute puppy!  But, I digress.  They are toe socks with little grippy things on the soles.  It cracks me up a bit due to the fact that toe socks were all the rage in middle school.  Plus, I do have issues with cold toes in the winter.  I may get a pair soon- as soon as we have an extra 15 bucks laying around.   Here's a link to the website.

Then of course, as all shopping excursions go, I found something else I liked:

 I guess they are like yoga blocks but you don't have to put your hands flat.  Some of the reviews talked about using it for older generations of yoga people (probably meaning people with arthritic hands).  I was told by my PT that my hand/wrist pain may decrease over time.  Guessing that the chances of that are unlikely, this may be a smart purchase for me.  Much more expensive than the toe sox, though.  Here's the website for these:


Saturday, August 21, 2010


One of the things Kevin is really serious about is what is and is not ironic. A simple coincidence is not ironic.
Here's one for the school books: I switched birth controls, as I shared previously, so that I could have more peace of mind about our family planing decisions (Read: I wanted a period monthly so that I would know that I wasn't pregnant). I've been off the active pills for the full week as of today and no period. In trying to give myself regular periods, switching hormones is actually causing me to not have a period. Irony.
It's not that I'm bummed out that I didn't have to endure cramps, backaches, and the whole tampon process. Believe me, I'm kinda cool with that. However, as long as I'm not having periods I'll have to take a pregnancy test once a month. Awesome. Those are 17 bucks for 3 tests. Can you believe that? It's something you pee on. Insane.
The lack of period does mean that I'm feeling really good lately. My diet is going well (usually I'm <1500 calories a day), my pain levels are low, and I have some energy most days. :)
Today I even let Kevin talk me into a bike ride. I'm proud to say that I kinda kicked his butt. I think my legs are better for endurance things than his are (since he really only does weightlifting). Also, I got a Jamba Juice out the meal. Bonus.
We're going to go to REI for some shorts for Kevin and some gloves for me. My hands don't hurt as much as they did the first time, but it would still probably be a good idea.
This is going to be a good weekend- Cassie and her parents will get here tonight and I take a hiatus from calorie counting for some gin and tonics and Chinese food.

Wednesday, August 18, 2010

Research Updates!

I got an email from the Lupus Foundation today!
Two good things about my undying love for hydroxychloroquine:

Hydroxychloroquine may help to delay the development of skin damage in some people with lupus. Since it is a very safe treatment if a person tolerates it well and continues to get their eyes checked at regular intervals, and since it is thought to have many benefits for people with lupus, this provides an additional reason to continue taking this drug when a person with lupus is feeling better. (Click to read the full study from the Lupus Foundation of America).

This study also mentioned that it appears that those with Raynauds also develop skin problems slower than those with Lupus who don't have Raynauds. Score one for the purple people!

Also, there's another article mentioning that anti-malarial drugs (such as hydroxycholoroquine) may decrease the chance of blood clots. (Click to read the full article from the Lupus Foundation of America) However, this article doesn't mention antiphospholipid syndrome at all. I just found out this past year that I have this fun condition that pairs up with lupus. I'm not sure if the article includes the clotting associated with this issue or just general clotting problems. Regardless, I'll continue taking both my anti-malaria drugs AND my baby aspirin.

Isn't it fantastic to see research being done on Lupus?

Today is going to be wonderful... hopefully!

First of all, I did end up going to the gym yesterday. 30 minutes on the elliptical and I was sweating horridly. :) I'm contemplating whether to go today or to just take a long walk with Kevin and Spartacus in the evening. It definitely will make me feel like less of a fat-ass (pardon the swearing, but seriously, I do feel like one).

It probably doesn't help that my period is due to arrive. I switched my birth control and this is my first round of monthly fun. Before I was on Jolessa which allowed me to have a period once every three months. Due to the fact that my arthritis likes to act up when I'm on my period it was a rather good plan for me. However, I would have to wait every three months for a guarantee that Baby wasn't making an appearance. Given that I'm not supposed to have a baby in the works for another couple of years, I wanted a monthly reminder that I was still in the clear. We could handle a baby right now, but it would possibly mean sacrificing my graduation date. And I've kinda worked really hard to graduate in May 2011. :) Besides, in 2 or 3 years we'll be financially stable, maybe with a house and some family close by to babysit. I think mini-me (or mini-Kevin, whatever) would like that (note how I'm not openly sharing his name... no one will steal it that way!.

So, enough over-sharing about my current condition of being "overwhelmed with fluids", as my friends from the Renaissance era would say (I have got to stop working on this thesis....). Anywho, new BC is okay. I've already noticed a change in my complexion. I'd like you to meet Ralph, he's the huge pimple on my forehead. Sigh. Other than that, no crazy side effects. I know it will have been a good decision to switch in the long run.

Today I'm going to be getting a facial from my girl Laurel at Perceptions Salon and Spa. It's one of their introduction deals. 30 minutes free. :D I almost went for the full hour at 40 bucks more, but I thought that I didn't want to indulge myself too much. I still need to go grocery shopping and then come back and work on my thesis after wards. Regardless, it should be very relaxing and hopefully it will help get rid of Ralph.

I don't live a sad life- do I?

Tuesday, August 17, 2010


So, here it is: I probably could have gone to the gym today.
Lately my excuse for not going to the gym has been two-fold: First, I want to avoid a flare. Therefore, I've been avoiding any extra strain on my joints. But I've also been telling myself that all time I'm not sleeping or spending time with my husband I should be working on my thesis.
That last excuse is the one I feel the most guilty about.
I have been working on my thesis today, but there's also been periods of time that I've been daydreaming, staring at the television, staring at facebook, and staring at my thesis, praying it would finish itself.
If I were still in research mode I would go to the gym and take a book with me. Unfortunetly, I'm supposed to be writing the sections "The Renaissance through the Colonial period" and "The Victorian era through Freud". It's very difficult to type and work out at the same time. I've pondered it. Impossible, almost.
I believe tomorrow I'll do better. Or maybe I'll do better today. Should I go right now? This process is obviously burning me out. Maybe I need a break.
I'll go and see if it makes any difference...

Monday, August 16, 2010

Doctors appointment and blood work

I had my doctor's appointment first thing this morning. It went really well- except for the part where they weigh me. :)
The blood work all came back great. My white cell count was low (which is normal for me), no anemia, and no kidney involvement. No active signs of the disease (not flaring today, woot woot).

Something has been on my mind ever since I visited Spokane. Children are extremely hard work. Damien wore me out and my knees were killing me. Thankfully, at the end of the day I was able to hand him off to his mother.

There was some rumor that Janelle and Wally (My best friend's parents) heard about me trying to get pregnant. I'm not, by the way. But, I guess Janelle and maybe Wally too, believe that I shouldn't get pregnant. This is what has been on my mind. I'm pretty sure her concern is for my health. I kinda ignore that portion of the process. If the pregnancy is terrible and I get put on bedrest for my own health I'll just limit it to one kiddo. I would be happy with one. I would be ecstatic for one. It's after the baby comes out that I'd concerned with- playing horsey and teaching them sports... helping them with their homework and baking cookies for their bake sale at school. There are days that the mere idea of any one of those things would exhaust me. And as you mothers are aware, parenthood is rarely one thing at a time.

I truly believe that I can summon the strength to overpower my lupus and raise a damn fine child. I think I just need everyone else to believe that too.

Motherhood isn't something I'm willing to give up for Lupus. My tennis rackets are collecting dust in the closet, I miss the kids I used to work with at the autism agency, and I've accepted that my running shoes will probably never be worn for that specific purpose. But I can't give up on wanting to be a mother.

Only a couple more years and we'll see how strong I am.

Thursday, August 12, 2010


This is the point where I say "yeah, I saw this coming", or "might as well, it's going to rain anyway" or something depressing or negative like that. I'm feeling very Eeyore.
I'm trying to compare how I'm feeling today to how I felt two days ago. I had PT on Tuesday and again today. Tuesday I was so peppy and happy... optimistic. Yesterday I walked around campus to get books and drop off papers. Then Kevin and I walked the dog around. I still felt good but there was a certain fog hanging over me. Last night I realized why: Stiffness. Sinking. That ache where my bones try to melt into the bed... and then came the hopeless feeling.
By hopeless I don't mean depressed or anything like that. Mostly just "Damn, here we go again".
I'm not as far along on my thesis as I would like to be. This extreme fatigue thing isn't helping. I'm trying to be less stressed about it. Mantra.
Back to work. Updates coming tomorrow.

Wednesday, August 11, 2010

Donating Blood

I tried giving blood today. e- I love giving blood- I have a cool tiny scar on my arm to prove it. In Washington they were totally cool with me donating and I did so as often as possible. I have a decently rare blood blood type so I felt like I was doing my part.
Unfortunately, California seems a bit more picky. I tried giving today on campus and it didn't work out. But, BONUS! I still got a coupon for a free pint of ice cream.
I'm not exactly sure why Lupus is a dis qualifier, though. It's not contagious, after all.
Anyone know why?

Tuesday, August 10, 2010

Feeling fantastic!

This week is off to a super great start. Camping went well this past weekend- Kevin enjoyed it, Sparty had a blast, and I managed to avoid bad sunburn while getting a lot of reading done. It was really nice.
I'm feeling really great- the only problem is that I'm spending all of my feel-good time sitting on my butt working on my thesis. It's rather lame.
I did go to physical therapy today and got a really great arm workout. I'm contemplating doing another workout tomorrow but my hip flexors are being cranky, so we'll see.
During my major thesis work I've been rocking a lot of the instant meals- Subway, frozen meat sauce that I made a couple months ago, DeLite pizzas, etc. I'm also trying hard not to snack during the day but it's difficult. I'm trying to stick to fruits, veggies, and not-so-bad dips like hummus and salsa. Kevin has been really helpful in all this- cooking what he's able to and telling me that I look gorgeous to keep my self esteem up. He's very good at it.
For the rest of the evening I plan to veg and not think. I spent the entire day reading about how women were considered deviant and morally weak. It hurt my brain.

Good night! I think it's wine time!

Friday, August 6, 2010

What a fun couple of weeks!

I had a fantastic time in Spokane! For the most part, I was in fantastic health for the entire time. The only issue was my slight cat allergy to Pickles, Mama and Papa's cat.
I was able to play with Damien a whole bunch! We rocked some t-ball, Damien climbed on my back and said "Rawr!" (I think I was a lion), and we made lots of "soup". After that first day of being a lion, or a dinosaur, or whatever, I decided not to do that anymore, but it was still fun.
The day I got back I needed a day to recoup. I visited Don to get some tightness worked out, then sat on my butt for the rest of the day. I ended up needing the day after, too, but now I'm back to my happy self. Two days is a pretty short recovery time- normally it's a week or so. I had a great workout in the pool at PT- some cardio, abs, and arms. My knees were a bit cranky so I didn't work them too hard. But, I think I'll be all set to go camping!
We're headed to Black Butte Lake for a couple nights with our Sparty. I'm planning on reading, fishing, and putting a dent in a case of Miller Lite.
Have a great weekend!

Wednesday, July 28, 2010

Yay for my eyes not being eaten!

Eaten by my plaquenil, that is. I've been having headaches for the past two weeks about and I thought that the plaquenil may be the culprit. Obviously, this was a scary thought for me as I prefer taking plaquenil to other, more damaging drugs. But, after a trip to the eye doctor and a round of that horrid stuff that dilates your eyes I was told that wasn't the cause. Thank goodness!
So, I'm supposed to make an appointment with my primary. I'm due for a physical anyway (blech) so I guess I'll schedule it after I return from Spokane.

Also, I had another kick ass day at PT. I rocked some deep water work to get my heartrate up and I used the bands to add a different dimension to my arm workout. It was a good time. Oh, and I chatted with a lovely old lady about arthritis. She was very nice.
I think I'm okay with being seen by this oother water therapist but I do worry that she's holding me back a bit. But, who knows, maybe I need to be held back for my own good?

Speaking of good- I'm going out to the pub tonight to meet some friends. I hardly ever do the bar-thing, so I think it will be fun for a change of pace. One of my friends is threatening to take me to a hip hop club afterward... which will NOT happen.

I leave for Spokane on Friday... I'm so excited!

Monday, July 26, 2010

Fantastic Weekend!

This past weekend was just super fun-packed! It's so nice to be feeling great so I can do fun stuff with my hubby.

On Saturday we made it to the California State Fair. We went in the evening to prevent sunburn. It was the perfect date- cute baby animals, BBQ food, fun rides, and Kevin won me a stuffed penguin. I'm very lucky to have such a great guy.

Sunday I finally caved in and went for a bike ride with Kevin. I used to have a road bike but it was stolen. Kevin recently bought me a new one. Biking is pretty difficult for me on account of the fact that I find it kinda boring. However, I'm trying to enjoy it. But first my neck has to get used to craning up to see where I'm going and my hands feel like they're bruised from the handlebars. Also, I bought some padded bike shorts after the ride too. I bet you can guess why I got those.

So, yes, I'm feeling pretty spunky. I'm stoked that I have these streak of feeling good going on. I had PT today and got in a great arm work out. I'm still working hard to not overdo it, but I'm hopeful that I'll feel awesome for seeing my nephews in a few days. :)

Friday, July 23, 2010

2nd day of working out!

I'm super proud of myself. I only did 30 minutes but I think it's great. I did 15 minutes on the elliptical doing the cross-training reverse mode and then 15 minutes on a bike. I took one of my thesis research books with me. I've found that one of the largest barriers to me going to the gym this past year was that I would tell myself I should spend that time doing homework. I'm doing my best to ignore myself when I talk myself out of getting exercise.

One of my favorite post-gym meals (when I go to the gym I do two small breakfasts) is half a whole grain and flax English muffin with a tablespoon of peanut butter and a drizzle of honey. I realized this morning that there are 200 calories in that meal. Kinda crazy! Stupid peanut butter. But, I have to keep in mind that my metabolism was increased from working AND I did burn 250 calories. I'm still only at 450 for the day.

I'm also planning to do a bit of housework today which, according to my wiii fit, counts as exercise. Hell, maybe I'll even take out the wii fit. I can't remember the last time we used it. I don't like it because it makes me sad when it tells me I haven't used it in awhile, I've gained weight, lost some balance, etc. Also, it makes this little "oh!" sound when you step on it. Not cool.

So, should I start using that thing or not? I've purposely not been weighing myself to keep my self esteem up. I've beeen feeling good about myself, that's all that matters....


Thursday, July 22, 2010

Wonderful day!

Today is looking like one of the best days I've had in weeks!

I woke up at 7 and I actually wasn't tired! Then I spent a few hours working on my thesis without any annoying hand/wrist pain. I still have a bit of a headache, but who wouldn't have one after 3 hours of reading and typing? If this continues to be a thing I'll make an appointment with my eye doctor. I think I'm due to be checked out anyway (Plaquenil and your eyes sometimes don't get along well).

I went to PT today. Since nothing in particular was bothering me today Don just worked some knots out of my neck/shoulders and ran me through some stretches. Then I got in the pool and actually got a workout! I did mostly arm stuff with a few minutes of deep-water work (all while chatting with Mary about eating naughty food while on vacation). It's amazing how much strength I've lost these past few weeks. As a result, I'm now tired. But it's fantastic to be tired because I DID something. Yay!

So, here is my mantra for the next couple weeks while I get back into things:
Don't get discouraged!
Don't over-do it! (I'm bad at this one!)

I REALLY wanted a burger for lunch but I resisted. Instead I had the SmartOnes Savory Steak and Ranch flatbread. It was no burger but it was pretty tasty. Six points for those of you watching those things.

I'm off to take a quick cat nap with Spartacus before diving back in to my thesis.

Wednesday, July 21, 2010

Today appears to be better :)

After going all day and night with a mind-splitting headache, an on-again-off-again fever and general crankiness I finally managed to fall asleep with the help of some NyQuil. The tylenol just wasn't working for me. I took two every eight hours(which I never do) and it helped my fever but not the headache. It was crazy.

I woke up this morning feeling TONS better. My throat is only slightly sore still, pretty much no headache, and no fever. Woot!

I'm hoping to go for a walk tonight with Sparty tonight in the sunshine (yesterday I couldn't tolerate light). I think it's going to be a great day today.

So, I've been writing down my calories each day on a notepad. I figure that if I'm honest with myself about what I eat I can see what my pitfalls are. Yesterday I was pretty bad. I was eating saltines all day to stave off nausea and a large amount of ice cream ("to soothe my throat". Yup, that's what I'm going with).

Anywho, my grand total for yesterday only came up to around 1800 calories. While my goal is 1500 (to lose weight), that's pretty good. I think it could have been worse. Luckily I prefer water and green tea sweetened with splenda. Also, I keep healthy microwaveable lunch food around in the event that I don't feel up to making myself a sandwich. Yesterday was SmartOnes Chicken Teriyaki with mixed veggies. Meh, but I ate it.

Today I'll get back on track- no ice cream and I'm going to make myself a sandwich with lots of veggies.

Have a good Wednesday!

Tuesday, July 20, 2010

To taper or not to taper...

My doctor decided not to taper me off of steroids since I had only been on them for a week. Yet, here I am with a killer headache, a fever, and nausea. Blech.
This is my first time on steroids, so I suppose it's best that I know now how my body reacts to them. Next time I'll taper off the drugs if I've taken them over three days.
I ended up canceling PT for the day. Tomorrow I'll start up physical activity again.

Thanks, steroids!

I went off steroids yesterday when my doc heard I was feeling better. Yesterday I also began developing a sore throat. Super. It's still bugging me a today and my glands are a bit swollen. So, I'm a bit cranky. C'est la vie.

PT at 11:30.

Sunday, July 18, 2010

Great weekend!

This weekend I have slowly begun to feel better. Walking was going well, so I upgraded to wearing my Sketchers Shape Ups for a little extra work out. I can't remember if I have PT or not tomorrow, but regardless I will be doing some sort of physical exercise.

This (almost) week long burst of steroids hasn't been terrible. No facial swelling or terrible weight gain. They do make me tired and a bit queasy unless I have a large amount of food with them. Also, I think I am a bit touchier as far as my feelings go and a bit irritable (poor Kevin). I am hoping that after I speak with my doctor tomorrow I can go ahead and stop taking them. If I'm feeling better I don't see why I would need to continue with them, right? I hate taking extra pills anyway.

I've decided not to be as bonkers about counting calories on weekends. Usually I do more physical activity on weekends as compared to during the week when I just work on my thesis. I still cooked healthy and utilized my subscription to Cooking Light:

Saturday night was pork tortas (Spanish for sandwices). WAY delicious.

And tonight we had black bean burgers.

Kevin was a real sport about the black bean burgers but will not be having the leftovers. He's just a carnivore, he can't help it. Meanwhile, I think it would be good to slip in some meatless meals during the week. Firstly, it's healthy because the meat is usually replaced with filling beans or grains. Yum. Secondly, it's cheap. Tonight's meal probably cost 5 dollars total for four servings. Third, one could argue that we saved a cow, but I actually doubt that. :)

There's an article on the topic of switching your diet to a vegetarian one called Effect of vegetarian diet on systemic lupus erythematosus but I can't read it due to MetaLib being a pain. From all the other websites on the subject it appears that switching your diet does nothing.

My doctor at Shriner's investigated this area as well. She did some blood test on me to determine what foods I'm "allergic" to. If you're allergic to something your immune system supposedly flares up in response to that allergen. And, in lupus, any increase in immune activity usually leads to the immune system attacking things that you need- such as interconnective tissues. For me, it came out to be dairy (including whey and casein), mushrooms, and corn. I ignored the mushrooms part because I like mushrooms too much. But, I did give up all things dairy. I ate cheeseless pizzas. I attempted to make a tofu cheesecake (it was awful), and I started to drink soy milk. In the end, I didn't notice any difference. The only big thing that happened is that now I think regular dairy milk is icky.

I suppose some people are willing to try anything to give up pain but I'm glad I can have pizza with cheese again. It gives my life joy. And, if you can't eat the things you enjoy what's the point?

Friday, July 16, 2010

Feeling a bit better!

These steroids must be doing the trick! Or, there's also the possibility that after 9 days of a terrible flare my immune system was ready to stop attacking me and I just happened to start steroids at the same time.
If I'm feeling pretty good tomorrow I'm thinking that I might do yoga in the morning. I've been waiting until I could use my hands and my wrists- it's hard to do downward facing dog (or upward facing dog, for that matter) with crappy wrists that hurt lots.
I've decided to run up to Spokane July 30-August 3. I'm hoping for good health until I leave and for the duration of the trip. I want to be a fun Auntie and I need happy hips to do that. I get to see Damien a lot during the trip and Riley (and his parents, heh) will be in town the 31st. It's going to be great. I foresee lots of t-ball in my future.
Cross your fingers for yoga tomorrow!

Thursday, July 15, 2010


I'm super tired today. I slept in, as I have been for all of this flare, but I still wake up and need coffee and a shower to get me moving at all.

I had physical therapy at 9:30 this morning. Don tortured me by working knots out of my legs and arms. It's quite painful. He says that it helps to be loosened up and it allows blood to flow easier. Whatever. He had an intern with him today who tried guessing my disease based on my symptoms. I even gave him the butterfly shaped rash hint and he still had to go look it up. He's only in his first year I think Don said, so I'll cut him a bit of slack.

The pool was hard. Before PT my legs (hips and knees) were tired. Then Don did his PT-ing to my legs and the felt like jello. I did about 30 minutes in the pool, using the easiest tools to add resistance. The worst was doing anything with my legs. I ended my session with a soak in the hot tub and some stretching.

Today will be day two of steroids. Two or three hours after I took my pill yesterday I became really nauseated and then I got really, REALLY tired. Supposedly the side effects will go away as I continue with the treatment. We'll see.

The rest of the day is dedicated to thesis work and resting my legs so I can make dinner tonight. Fish Tacos with Lime-Cilantro Crema (Cooking Light) is what's on the menu for the evening. I'm thinking a Hungry Girl Margarita will pair well with it.

Wednesday, July 14, 2010


So, I'm on Methylprednisolone, 16 mg, once a day. I just got them today. All I can say is that it tastes ucky. I'm a bit concerned because I know I got really sick on prednisone and I can see that name hiding in the name of these pills. We'll see.

Exercising and Eating Healthy

Actually, that first thing isn't really happening.
Due to this current long flare and other flares before that my physical activity has been limited. Kevin and I try to go for walks in the evening but it's difficult with high temperatures and my sun sensitivity. It's annoying to put on SPF 80 and a big hat just to take the dog to poop. So, I do what I can.

Ever since I started showing symptoms activities slowly began to become off-limits for me. I was injured Junior year of tennis and just never went back. I loved tennis. I haven't played in years due to a combo of sun sensitivity, cold sensitivity, and joint pain. I have a $200 racket(Probably $50 now) and a hopper full of tennis balls in our front closet. I lifted weights in high school with a group of football and basketball players- I loved maxing out and seeing the results. Running calms me but my knees won't take it anymore. It's incredibly frustrating.

For awhile I was trying to get into X Bike classes at my gym (Because my Rhuem told me to never, ever, ever run again). They're basically spinning classes but the handlebars move so it's a bit more of a full body workout. I was doing really great for awhile- I was improving my cardio (I have asthma so that's pretty cool) and my legs didn't give out after stepping off the bike anymore. I was really excited. Then one flare after another happened. Each time I would try going back to notice that I couldn't ride quite as hard or I needed to "swoop" a bit more than usual. I would start making progress, slowly, only to be disappointed with another week or two away from the bike. I'm debating whether or not to go back.

As a result, I haven't been to the gym in ages. For someone as cheap as I am, I feel terrible about the $$ lost in dues. Going while I'm feeling "off" isn't a good idea though. A small amount of creaking in my knees while I'm on the elliptical can very quickly lead to me gimping around the next day.

As I said in a previous post, I do attend PT twice a week. I go for 30 minutes with Don for stretches and such and 1 hour in the pool (usually with Mary, she's great). On good days in the pool I can get a great workout in. On bad days I let the water soothe my body and congratulate myself for even getting in the water- even if it's just to walk around.

Now, I know a lot of people wouldn't mind having an excuse to sit around. My doc told me that most lupus patients don't die from lupus complications. Rather, they die from turning into a fat-ass and developing heart problems. I'm a very active person and I LOVE working out, so I will NOT let this become me. I'm going to be very determined about this.

As a result of all this couch potato-ness I've decided to eat healthier. I used to be able to eat whatever I liked and stay steady at one weight (while looking very trim I may add). Now I'm heavier than I used to be. By no means am I fat or overweight, but I'm not where I used to be. I don't have the time during school or the energy (usually this) to do what it takes to maintain. So, I've subscribed to Cooking Light. This magazine is actually VERY good. I usually find a large handful of recipes in each edition that I want to try. Most are delicious.

Very recently I've started watching calories. I try to keep it at around 1500 a day. I use all whole grains and enjoy lots of protein and good types of fats (olive oil, omega 3's, etc). I still manage to sneak in a drink eat day too and usually something sweet. I haven't felt deprived, yet. For helpful tools aside from Cooking Light I've also been using Eat This, Not That , my mother-in-law (who works for Weight Watchers), and occasionally Hungry Girl. It's all a matter of personal preference, I think. For me the biggest keys are portion control (usually in terms of carbs or steak... or wine...) and eating food that TASTES good. I'm a cook, I won't eat something that tastes weird or has a funny consistency just to get back to a size 4.

Most of all I'm working on being happier with myself. Kevin still finds me attractive and I still get the occasional frat boy at school who checks me out. I just don't worry about the numbers- I haven't weighed myself in quite some time. There's no point in obsessing over that number when I can't really do much about it.

I'm just going to continue being proud of what I can do, like making a healthy dinner tonight and taking a walk on the trail with Kev and Spartacus.

Tuesday, July 13, 2010

Update- Doc called

My Rheumatologist called me back to chat about my flare.
He would like me to go on steroids for a week and call him back on Monday.

Day 9

Today is the ninth day of my current lupus flare. It's been a long nine days. I'm happy to report that my joint pain has been worse in the past. The worst joints affected are my hands and my knees. Towards the evening, of course, everything else starts acting up as well, but usually after I've finished making dinner. The fatigue is pretty noticeable, but thankfully I'm on summer break so energy isn't needed very much.

I made it to physical therapy today. I've been going to El Dorado Physical Therapy in Folsom since my car accident in November. I fell in love with aquatic therapy when being treated for those injuries and learned that it's a promising treatment and mode of exercise for people with arthritis (and Lupus!) as well. Today I couldn't go into the pool (no energy) but Don (my PT) worked to do something with my blood flow by squishing my back muscles (I don't know what he was doing, maybe if he reads this he can comment). I'm not sure if it did anything but we'll see how I feel tomorrow. He also popped my back (always a treat), massaged my knees and the surrounding muscles, and stretched out the muscles near my wrists. No definite change so far, but cross your fingers.

Due to the hand pain, I won't be writing much more. I purchased one of these puppies:

It's a paraffin wax bath. The PT office has a fancy one and I found it excellent for soothing the joints in my fingers right before it's time to write a paper. So, we found one at Walmart for 30 bucks.
Anywho, I'm heating mine up right now. I don't think I'll be working on my thesis tonight but I will be needing to do the dishes. Sad, right? Giving my hands a spa treatment in preparation of putting them in dishwater and scrubbing pans? Just a bit.

So, off to soak my hands, then dishes, then dinner. Cooking light, again. Ginger-Soy marinated Tuna with rice noodle salad. I'll let you know if it's decent.

Introductions and Medical History

I'm well aware that there are plenty of Lupus blogs out there. But, as I was lying awake last night- frustrated by a flare and the ineffectiveness of the Vicodin I finally caved in and took- I decided that I needed an outlet to discuss my journey, so here we are.
I began showing symptoms at age 12, while I was in middle school. It began with Raynauds (sensitivity to the cold with my blood vessels constricting) and fatigue. I was playing tennis and it began to interfere a bit. Wearing gloves and holding a tennis racket isn't exactly easy.
As I grew up my symptoms continued to evolve. Joint pain began eventually, along with muscle weakness. I began experiencing "flares"- periods of time over the course of a couple days to a week where I would be extremely tired and achey. But, I had no idea what they were. As a teenager, this was hard to deal with.
After meeting with a few doctors who insisted that I was a hypochondriac I was eventually referred to Shriner's childrens hospital in Spokane, WA. My doctor was Meredith Heick and she was the first doctor who actually explored why I was feeling the way I was. After some tests and a list of my symptoms was gathered she decided that I had "lupus-like" symptoms, but left me with a diagnosis of being ana positive and having some sort of auto immune disorder with a definite arthritis component. I was lacking the definite "butterfly" rash and Dr. Heick didn't want to give me a diagnosis that may make it difficult to get insurance later on.
Of course, lupus is what I had and what I still have. My current physician, Dr. Mansour of Cameron Park, CA (Marshall Rheumatology) basically told me "duh" when I told him that I hadn't been diagnosed but most doctors were leaning towards lupus. So here I am, 22 years old, with lupus.
I have been on a series of medications during this journey. To begin they were just treating my raynauds and my pain. I took niacin for a short period of time, supposedly to help my blood vessels. No matter how small the dose my body would flush bright red and I would feel warm to the touch. Not great for self-esteem in eighth grade, I can assure you.
After being referred to Dr. Heick I was placed on Vioxx. This was my miracle drug. Flares occured rarely and I could be a teenager. I played tennis, I exercised, I ran- it was like lupus never happened. Eventually, as many of you may now, Vioxx was pulled off the market. I hurridly switched to Bextra for as long as I could until the FDA realized that Bextra had the same terrible side effects. For awhile I lived off remaining Bextra samples I could find from friends' parents or family members. And then I ran out and was left with Tylenol.
Our next shot was with hydroxychloroquine. I'm still on this medication to this day. It works pretty well for me, most of the time.

So, this blog is going to be my journey and a way to share my progress and my regressions. I have chosen the blog title because of my recent struggle with my disease. Over the past year I have lost a lot of my strength. Each time I make progress- losing some weight, getting stronger, exercising regularly, keeping a clean house- it seems that I get sick or have a flare. I then back off, relax, and regress. Then I start at the beginning again.

DISCLAIMER: I should mention that everyone is welcome to read my blog. Friends, family, and strangers are all allowed to comment and to follow my posts. However, I am going to be frank with my symptoms and my beliefs. I may whine, I may swear, and I may talk about how lupus is impacting my life. As a warning to my family members who are squeamish about any discussion of sexual related matters- I may bring up if my symptoms are negatively impacting my marriage or if I'm having concerns about our future as parents. I'm not ashamed to share these things, I hope you won't be ashamed to read them.

I look forward to having an outlet.