lupus

28e Anniversaire et 10th Anniversary

The Meghan, , 7 Comments

French Word of the Day: Le futur (luh foo-tour)- the future

I wasn’t sure that I was going to write this one, but I thought it was a good one to note.

10 years ago today, I had just returned home after a stint in the ICU.  At the time, I was sick and tired of being sick and tired.  I had been in and out of doctors’ offices for the past 8 months, and now here on my 18th birthday I had evidence of my own mortality.  I had been prepared to think I was going to live and be young forever for at LEAST 10 more birthdays.

For that last hospital visit, the nurses worked very hard to get me out for my birthday.  (Nurses are seriously the best.)  While I appreciated them, I was pretty bummed on my birthday.  It was a Saturday and coincidentally also one of our high school dances.  I didn’t end up going to the dance.  My best friend Christine came over and hung out with me all night, but I was pretty bad company.  I was sitting and thinking about all the things I hadn’t done yet: learned French, lived alone, been in (romantic) love, gone to college, or even graduated high school…

I began wondering if I would ever be healthy enough to be normal. Time seemed to have stopped and put everything on pause.

But then something happened.  Time restarted.  I began to feel better.

It was everything.

I knew I couldn’t spoil things this time, so I decided I was going to push myself.  I finished all the course work I had missed and graduated high school.  I went to college.  I got a role in every single theatre production they had that year.  I got a lead role the next year.  I wrote a play and saw it performed.  I went to Ireland on a research project.  I traveled.  I went to France completely alone and not knowing a word of French.  I learned French.  I fell in love.  I graduated college in the top 10 of my class with honors and 2 majors.  I learned guitar (well, 3 songs).  I got my heart broken.  I got an internship.  I got another internship.  I searched for a job.  I got a job.  I tried online dating.  I stopped online dating.  I begged for a job I wasn’t qualified for.  I got it.  I did well enough that I got another promotion after that.  I fell in love again.  I got invited to participate in several friends’ and my twin sister’s weddings.  I got to see some of them become parents for the first time…

I remember thinking, “I made it!” when I was sitting at my college graduation, and I’m probably one of very few people who gets excited when I see a wrinkle or a grey hair.

There have been health scares in between those moments and I’ve been sick enough to need chemo, but nothing was ever as bad as that first time because I know now what I didn’t know then- that things get better.

It’s given me the courage to put myself out there, and for that, I’m grateful for lupus.  Looking back on the last ten years, there’s very little I would change.

I look forward to the next ten.

Here’s to aging!

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The Same Thing

The Meghan, 3 Comments

French Word(s) of the Day: la même chose (lah mehme shows)- the same thing

I appreciate everyone who told me that my improved health was much more exciting than Paris. I respectfully disagree, but I appreciated the sentiment all the same.

In a sweeping new development, my new medicine was making me sick to my stomach.  (I know, none of my medicines EVER make me sick.)  They changed it to another medicine that is supposed to be the same thing, but with a different name and a different formula.  To me, this means that it’s not the same drug, but I’m not a doctor.  Maybe the word “same” works differently in medical school than it does in the dictionary.

I still got sick from this medicine.  That stayed the same.

A month after I began the new medication, I took blood tests.  The doctor called me on January 1st to let me know that my liver levels were now abnormal, to which I replied, “Well, Happy New Year to you, too!”

I pointed out that my liver was fine before this new medication and recommended that they switch me back over to the other medication. “Oh no, we’re just going to lower your dose by a little bit and see how that works.  You should stay away from alcohol and Tylenol for over a month, at least.”

Um, what?  Didn’t we just go through this?!  I think my adult life will be spent not being allowed to indulge in alcohol.  I should have taken better advantage of my teen years!

I’m going to call this now: my liver levels will still be abnormal in a month and the doctor is going to change it back to the other medication.  Mainly because- I don’t know- they’re not the same thing.

She got me too late for New Year’s Eve, though!  I got to drink!  I may have overindulged a little, but my liver is currently still functioning.

I hope you all indulged for New Year’s too, because we all made it through 2013 🙂

I rang in 2014 in style! (The Nutella ring was a gift.)
I rang in 2014 in style! (The Nutella ring was a gift.  Sorry, I have no idea where she got it– maybe Heaven?)

I actually made friends on New Year’s, so take THAT doctor who called a day too late to stop my alcohol consumption.

I promise that 2014 will be the year that I post my Paris pictures.  Or maybe I’ll just drag this thing out for a few years.  Paris 2013 coming to you in November of 2017!

November, Where Art Thou?

The Meghan, , 2 Comments

French Word of the Day: disparu (diss-par-ew)- gone, disappeared

For those of you who think the title should be “Wherefore art thou” like the line from Shakespeare’s Romeo & Juliet, you’re incorrect.  Wherefore means why.  It’s a common misconception that I’m breaking you all of now.  Juliet isn’t calling out to Romeo, she’s asking the universe why he’s a Montague, son of her foresworn enemy.

And now, we speak French.

I have no idea where time has gone.  I was leaving for Paris, and then all of the sudden it was the week before Thanksgiving.  I still haven’t put up 8 million posts detailing every millisecond of my trip!

It was quite the trip.  I plan on stretching out blogging about it on here from now until Christmas.  (At my current rate of posting, that equals about one entry.)

I took so many pictures that my phone has been yelling at me.  “Yo Meghan, when you gonna take these things off?  You don’t have any more space in the cloud.”

Why do clouds run out of space?  I thought it was impossible to fill them.

But Paris comes later.  To tide you over:

Eiffel Tower from the Metro

I went to my doctor today, and she let me know that my kidney/ lupus levels are pretty much in the normal person range.  I’m pretty excited.  For today, that will trump Paris.

But just for today.

Hasta La Bye Bye and a Merci

The Meghan, , 3 Comments

French Word of the Day: MERCIIIIIIIIIIIIIII!!! (mare-sea)- thank you (excitedly written)

Thank you so much to everyone who donated to the Lupus Walk/ was a part of the Lupus Walk.  You guys, we raised a LOT of money!

I was so touched by you all coming.  Really, it meant a lot.  They forgot my speech, but I would have definitely thanked you all in it.  You rock, and couldn’t do what I do without you.

Tank supports Lupus. (Courtesy of Aunt Kathy)
Tank supports Lupus. (Courtesy of Aunt Kathy)

It’s been an exhausting few weeks.  Now that everything’s all wrapped up, I’m on my way to Paris!  I’ve been pretty much worthless with excitement all day today.

Pain au chocolat here I come!

Test Results

The Meghan, , 7 Comments

French Word of the Day: rémission (ray-miss-ee-own)- remission

The test results for the chemotherapy and in, and they are looking fabulous!  I would have been just a touch angry if the doctor had come back and said, “Well, that whole 6 months of chemo thing was a bust.”  Luckily, her words were, “Your levels are almost to normal! (Except for some abnormalities due to your disease.)”

Please note that this does not mean I’m cured.  I’ve had to specify that a lot.  I think every time I speak to someone about it I confuse people.  To save myself some time, I’m going to write the conversation I’ve been having with everyone.

Person: Oh my God, your results are good! So you’re completely cured!!!!
Me: Um, not quite.  It’s under control.  But not fully.  My kidneys are no longer being destroyed.
Person: So you’re not better? Do you have to go on chemo again?
Me: No, I’m better!
Person: But you just said you weren’t.
Me: I’m better than before.  My body is no longer attacking itself.
Person: So you’re cured!!
Me: You can’t cure lupus. It only goes into remission.
Person: So you’re in remission!
Me: Not yet. I’m going to be taking a special medicine for at least the next 2 or three years to control everything.
Person: But I thought you were better? I’m so confused.
Me: Tell me about it.  I’ve been confused for the last 8 years.

 

In celebration (and because my hair has grown back in the last two months), I got a haircut.  Check it:

I might have gotten a new photo app that I'm playing around with.
I might have gotten a new photo app that I’m playing around with. (Just for the words.  The bad lighting and poor photo quality are all my own.) My hair might also be slightly frizzy.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Days Until My Next Parisian Pain Au Chocolat: 16

No Mo’ Chemo

The Meghan, 4 Comments

French Word(s) of the Day: jamais encore (jah-may on-core)- never again

That chemo thing I’ve been doing is finally done.  Most of you probably know this because I’ve been posting it on every social media outlet available to me.

My mom and Alyssa came over to my apartment afterwards.  Alyssa wrapped me in a huge “Congratulations!” banner, which went very well with the Disney Princess tiara and balloon she brought.  I looked appropriately festive.

You guys should appreciate that I'm putting aside my vanity to properly illustrate how to wear a Congrats banner.
You guys should appreciate that I’m putting aside my vanity to properly illustrate how to wear a Congrats banner.

They all warned me that the last chemo session would be the worst because it’s cumulative, and they were right.  Rocio asked me if I was going to work the next day, and I said, “I’ve been up for 20 minutes and I’ve already thrown up twice, so probably not.”

I spent the rest of weekend lying very still on the couch finishing the second season of Scandal (which lives up to its name).  Christine, being a proper best friend, came over to hang out with me for a little bit and helped reintegrate me to the world of solid foods.

But things have begun to go back to normal.  My friends all took me out last night for a post chemo shot (of alcohol… no more medicine, please).  It was a night of merriment and I finally got to dance without feeling sick.

Thank God.

What’s up next?  I’ll start another medicine shortly for maintenance, and I fully plan on going into remission directly afterwards.  (Pretty much the second after I start it.)

Last Lupron

The Meghan, , 2 Comments

French Word of the Day: aïe (eye)- ow

I’ve gotten my final menopause shot!  I’m in the home stretch here.

My back’s been in pain from it for about the past hour and a half.  Whoever said “complaining never helps” is WRONG, because I’ve been lying on the couch saying, “Ow, ow, ow, ow, ow” without stop, and I’m feeling much better now.  (It’s also possible my Tylenol finally kicked in, but that’s a minor detail.)

After my rough chemo session, I did develop two bruises on my arms.

Check out these bad boys.
Check out these bad boys.

I’ve spent most of my week figuring out how to both cover my arms completely and dress for the warm weather.  They’re opposing goals, and the warm weather has been winning.

Other than the bruise and the vomiting, I have been getting better.  It’s a slower process this time, but I still managed to have pancakes on Sunday.  I mean, they were whole wheat, vegan and healthy, but I put syrup on them.  That counts.

I will start writing more soon, but my computer’s acting up.  It keeps turning off and then insisting that’s it’s December 31st, 2000 when it finally turns back on.  This is probably indicative of some kind of expense malfunction.  Or possibly my computer is a time machine…

San Francisco

The Meghan, 1 Comment

French Word of the Day: bavard (bah-vard)- talkative

As I go through the treatments, they become less and less invasive in my life.  I’ve become more aware of my trigger foods, so I haven’t been getting as sick.  I slept more than usual after my last treatment.  I got 10 hours of sleep one night- something I hadn’t done since college.  (College was my nap Renaissance.)

Work needed me to fly to a conference in San Francisco on Wednesday.  My doctor had cleared me for air travel.  Her only comment was: “If there’s someone next to you who’s sick, you need to move.”  I didn’t point out that a plane is an enclosed space with recycled air circulating around.

Germ Plane

My seatmate wasn’t sick, but she talked so much that I think I would have preferred a sick person.  She sat next to me and said, “I don’t like to read or watch movies on planes,” which is exactly what every traveler wants to hear.  She did, however, like to complain about how long the plane was taking and inquired every five seconds what time it was.  I pretended to be asleep, but she just reached around me and started flirting with the guy next to me.

Luckily, I only had to sit next to her for 4 and a half hours.

The conference itself went very well.  I got to go out for an hour or two at the end of the day to walk around.  I went to Pier One (not the store) and got a fabulous seafood dinner.  There is no photographic evidence of my meal because I didn’t take pictures of it.  I’ve begun eating my meals instead of just taking pictures of them and placing them on Instagram. (Just like you’re not friends in real life until you’re friends on Facebook, you haven’t had a meal unless it’s been placed on Instagram.) I’m still in the test phase of this new food policy.  I don’t know how I feel about it.

I did take some pictures of the pier with my ever-dependable phone.

The sunset ruins what would have been a fantastic view of the light-up sign. (That silly sunset, always ruining pictures.)
The sunset ruins what would have been a fantastic view of the light-up sign. (That silly sunset, always ruining pictures.)
This is NOT the Golden Gate bridge. It's the less popular sister, the Bay Bridge.
This is NOT the Golden Gate bridge. It’s the less popular sister, the Bay Bridge.
Fun fact: The trolley cars go until midnight. Other fun fact: I was asleep well before that time.
Fun fact: The trolley cars go until midnight.
Other fun fact: I was asleep well before that time.

My seatmate on the flight home didn’t speak to me at all, so it was a much better experience.

The conference went really well, so I might get the chance to see more of San Francisco next year!  I was a bit worried the treatments would put everything at a complete standstill for 6 months, but that has proven to be false.  (In a good way.)

3 (Not to be confused with the Britney Spears song)

The Meghan, , , 6 Comments

French Word of the Day: troisième (twa- see-em)- third

Shirts with three-quarter length sleeves are the clothing item to wear while getting treatments.  (I know you all worry the most about fashion when you’re getting sick.)  More of your arm is revealed for any needle action, and yet you can still stay somewhat warm.  Hospitals are generally 3 degrees below freezing at all times.  They keep it cold so that you’re too busy shivering to realize your food looks like this.

Luckily, I own almost exclusively three-quarter length shirts.  My wardrobe is getting a workout, and I plan to wear a different shirt to every session.

Check out the three-quarter length action.
Check out the three-quarter length action.

Today’s session has been going well- much better than last time.  I have my parents hanging out with me again.  They’ve been calling me Wonder Woman because of my red band, and have expressed their pride at my ability to type this all one-handed.

And with that, I’m off to use my superhero powers to convince the nurses to unhook me.