lupus nephritis

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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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.

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

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…

Cinco de Chemo

The Meghan, 3 Comments

French Word of the Day: cinq (sank)- five (I realize I’ve written it in Spanish everywhere else.)

Well folks, we’ve reached numero cinco.  My veins weren’t cooperating, so I got stuck twice.

You can kind of see the bruise in this photo:

Relaxin' in my chair
Relaxin’ in my chair

I was trying to get a decent photo for the blog while sitting by myself.  I tried to only take pictures when no one was looking, which turned out to be difficult in a room full of people.  I’m sure it’s not everyday the nurses get to see a patient taking selfies while receiving an IV.

This chemo was the least fun.  (To be fair, no chemo session is “fun.”  They’re rated on a scale from “blah” to “Ughhhhhhhhhhhhhhhhhhhhh.”)  I passed out on the coach when I got home. My mom- being the fabulous woman she is- did my laundry while I was sleeping.

This morning, I woke up several times to get sick.  I decided my fellow commuters might not appreciate me throwing up on them, and stayed home from work.

5,000 saltines later, I’m feeling better.

Only one more to session to go!

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.

C’est ici!

The Meghan, , 15 Comments

French Word(s) of the Day: C’est ici! (say ee-see)- it’s here!

Well everyone, it’s chemo time.  Based on the messages and words of comfort I’ve gotten from everyone, you’re all way more freaked out about this than I am.  I appreciate the concern.  I’m doing splendidly.  I think I’m making people nervous with how calm I am.

I’m typing this while getting my IV.  I’ve got 6 hours to kill.

I knew everything was going to be okay when the nurse said, “You can eat and drink as much as you want whenever you want.”

They have a “Be respectful of those around you” policy, which is code for “no guitars.”  I don’t think I’ll get to fulfill my dream of starting a jam session in the infusion lab.  I’m not supposed to bend my arm during the infusion, so guitar playing isn’t an option.  There’s a little monitor that beeps every time your arm is bent too much.  Apparently my arm is constantly bending, because I’ve set that thing off about 3,000 times today.

My mom and dad both kept me company (they’re such troopers, those two!) and got to watch me as I attempted to eat lunch without moving my arm.  As I’m well known for my incredible coordination, this went well.  My shirt thought everything was delicious.

I’ve been reading all day, and it’s been glorious.  I’ve already finished a book during my time here.  I realize you’re not supposed to call time spent getting chemo glorious, but I’m an English major who doesn’t have time to read anymore.  It takes me weeks to finish a single book.  This is like being in a library… a ugly library where they stick you with needles and take your blood pressure every hour.

I had my dad take photos so that you’d all have photographic evidence that I’m not falling apart at the seams.

I may have forced him retake this photo several times, but he only rolled his eyes once because he loves me.
I may have forced him retake this photo several times, but he only rolled his eyes once because he loves me.
I had to tell off the photographer for his bad jokes.
I had to tell off the photographer for his bad jokes.

I shouldn’t get too sick, but I’ll post over the weekend so that you know I’m okay.  I have a very full schedule of hanging out and doing nothing planned.

Biopsy Final Results

The Meghan, , 10 Comments

French Word(s) of the Day: les maladies auto-immunes (lay mal eh dee oh tow ee mun)- auto immune diseases

Many people think lupus is Latin for “wolf,” but the actual translation is “complete and utter confusion.”  It’s appropriately named, as doctors still only have vague ideas about it and most ordinary citizens know it as “the disease that no one actually had on House, MD.”

It should come as no surprise that my results caused utter confusion.  I got a message from my doctor that started with, “Your report shows a focal proliferative form of lupus nephritis progressing towards diffuse proliferative form with membranous nephropathy” and ended with “Please let me know if you have any questions.” (I assume she actually meant “Please let me know if there’s any part of this that you DON’T have questions about.”)

I experienced a panic that I haven’t felt since my last biology test.  Am I supposed to know these words?  Why isn’t this multiple choice?  I’m POSITIVE that wasn’t on the study guide.

Diagnosis:  After speaking with her for about 30 minutes today, I have a better idea of what this all means.  My kidneys are being attacked; they’re inflamed.  They still work like proper kidneys, so that’s very good news.  We need to treat my lupus to prevent damage.

Treatment: They’re holding off on any chemotherapy.  Sterility is a possibility in the type I would have to take, and they don’t want to take away any chances I may have to reproduce.  (My future children are vital for the continued improvement of humanity.)

I’m going to be put on a high dose of steroids and an immuno suppressant called CellCept.  This drug is typically used for transplant patients.  They’re the types of drugs with a list of side effects 12 miles long, so we’re in for a fun ride, everyone.

They’re going to see how well I do on these drugs in three months, and then reassess whether or not I’ll need chemotherapy.  (They’re crossing their fingers for “no.”)

If you want to be as confused as I am: I have class III, IV, and V of lupus nephritis.  That’s right; you can have more than one at the same time.  Class VI is the worst class- it means you’ve got permanent damage; I do not have class VI.  Honestly, I still don’t understand what all the classes mean.  If anyone knows, feel free to share your kidney knowledge with us.

This site was helpful to me if you want to learn more.  Do not go to Wikipedia.  It’s so unclear that I suspect my doctor had a hand in writing it.