Lupus

A Change in Medication

The Meghan3 Comments

French Word(s) of the Day: la stérilité (la stare-ill-ee-tay)- sterility

After my fabulous, late-night fiascos, my doctor has decided that CellCept is a bad idea.  Apparently, getting sick every night isn’t good for you.  Who knew?

I stopped taking it, and I’ve been feeling much better.  I’m currently in high spirits- still exercising, eating right, and maintaining an active social life.

Saturday, I had a date with this fine fellow.
Saturday, I had a date with this fine fellow.

Medication-wise, we’re back to cyclophosphamide, a form of chemotherapy.  I’m actually happy with this decision.  The CellCept was not worth the trouble.  I’m not saying CellCept isn’t great for other people, my body’s just not so much a fan of it.

As for what taking chemotherapy will do to my body, that remains to be seen.  I’ll be taking it once a month for 6 months.  It’s supposedly a five hour process each time.  Unlike cancer patients, I probably won’t lose all my hair; but even if I do, hair grows back.

At the end of this, I’ll have kidneys that aren’t being attacked.  I’m super excited about that.

Cyclophosphamide is in the group of chemotherapy that can cause sterility.  Because of this, even though I’m not even in a relationship or even currently contemplating children, I got to speak with a fertility specialist.  (Ah, the fun things I get to do before even turning a quarter of a century old!  If you think it’s awkward having to discuss your relationship status with relatives, it’s even more fun with a fertility specialist.)

I won’t be taking a strong enough dose of the medicine (and I’m not old enough) to be in an extremely high risk category for becoming completely sterile.  To help preserve my fertility, I’m going to be placed in a state of menopause for the next 6 months during treatment.  I’ll get to experience the joys of hot flashes, night sweats, and moodiness that will surely make me a pleasure to be around.

You should all be warned that I’m planning on throwing this into a lot of future conversations to make people feel guilty.  “You’re having a bad hair day? Yes, well, it’s not as hard as going through menopause- TWICE.”

Life’s not about what happens to you; it’s about how you use those experiences as automatic trump card.

Week One

The Meghan2 Comments

French Word(s) of the Day: plus tard (plew tard)- later

Thanks for the kind words, everyone!  This blog is intended to keep everyone curious informed.  If anyone asks how I’m doing, please feel free to send them this link.  They’ll probably say, “Can’t you just summarize?  Reading all that sounds like a lot of work.” But it exists!

The first week of strong medication is officially complete.  It wasn’t the complete and total success they were hoping for.  I spent the first four days getting sick every single night, so they took me off the CellCept for a bit.  (How excited are you all to currently have that image in your heads?!  I hope you’re not reading this while eating.)

They’re not sure if I caught a bug or if it was the medication, but we’re going a more gradual route for right now.

Don’t worry everyone; I’ve had my flu shot!  No more hospital visits for Meghan.  The last time was enough for the next few years, I should think.

I’m incredibly stubborn, so I’m refusing to let my medications take over my life as much as they’re trying to.  I’ve started a diet and exercise regimen to counteract their effects.  As it’s the start of the year, I’m pretty sure everyone in the office just thinks I’ve just made really intense New Year’s Resolutions.

The diet will be discussed at a later date in case there are any fellow Prednisone users out there interested.  (Spell check wants to change “Prednisone” to “prisoner.”  I think that’s a fairly accurate change.)

I’ve been feeling much better these last few days, and I’ve been pretty active.  I even made it to Pilates class yesterday and the gym today!  Even though it’s not on the diet, I did have some cake this weekend.  It’s never a bust week when there’s cake involved.

m&r's cake

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.

L’Hôpital

The Meghan, , 14 Comments

French Word of the Day: le rein (luh ren)- kidney

I don’t generally like talking about my illness when I’m doing poorly.  No one wants to think about it when they’re not doing well.  I don’t really want to talk about it, but I know everyone is curious, so I’m writing blog posts instead.  That way I can just send people the link and we don’t have to discuss it.

According to my reader stats, a ton of people checked this page yesterday, so I have a feeling you were all expecting this.

My lupus is doing what it does best, attacking things and causing general mayhem.  Right now, it’s focusing on my kidneys.  They’re currently doing whatever it is that kidneys do properly (obviously, biology was my best subject in school), but some of my levels indicate that there is something wrong with them. I had a biopsy Friday to make sure the cells aren’t damaged.

I’m not quite sure who said, “Your organ is damaged?  Let’s take a piece of it out! That sounds not at all crazy or detrimental to your health!”  But I’m an English major.

They took a really, really long needle that is longer than my torso (I made them show it to me afterwards… how they didn’t go right through me, I’ll never know), and stuck it in my back.

I literally got stabbed in the back by doctors.

Obviously, food is always my biggest focus.  I wasn’t allowed to eat for 6 hours before the surgery, so my first question when I was finished was “When do I get to eat again?” Personally, I think the recovery room should have had a buffet table.

The hospital took their sweet time in feeding me, but my parents snuck me fruit and pain au chocolat.

That’s why I take them places.

I should have taken them up on their offer to get fast food for me, because this is what qualified as food at the hospital:

Cream of Goop

I believe this paste is typically used in childrens’ art projects.

Everything went well for the biopsy.  I did have a little internal bleeding, but nothing that’s going to require surgery.  I’m not allowed to play any contact sports for the next two weeks.  (There goes my successful rugby career!)

My doctor also said I’m not allowed to “jump dance”.  I will find a way to dance without jumping or moving my torso… just wait and see.

What’s Next: They’re not certain, but probably 6 months of IV chemotherapy.  I’ll keep you updated.

Thanks to everyone who visited me and brought me food and flowers!  Much appreciated 🙂

Pain Au Chocolat Count: 2- one from my parents, one from Allison and Paul

More Lupus Walkin’

The Meghan, 2 Comments

French Word of the Day: le comité (co me tay)- the committee

Rocio will be able to make all her ideas for next year’s Lupus Walk become a reality.  She and I have both been placed on the Lupus Walk Committee for 2013.

I went to the Lupus Foundation’s Chicago headquarters today to pick up my prize for raising money (again, thanks everyone!).  It’s a sweet tumbler:

I also got a purple bag for grocery shopping.  I’m all hooked up with my lupus gear.  I’m going with the “I got them because I’m spreading awareness” mantra, but really I just wanted that tumbler.

While I was picking it up, one of the women who works at the Foundation asked me what I do for a living.  I mentioned that I’m a meeting planner, which caught her attention.  She invited me to help plan next year’s event.  And the rest, as they say, is history.

I think this means you all have to actually attend next year.  I’m giving you a year’s notice instead of a week’s this time.

Although I have no idea what day it’s taking place.  I should probably figure that out before the first committee meeting, yes?

Lupus Walk 2012

The Meghan1 Comment

French Word of the Day: un don– donation

I participated in the lupus walk two weekends ago with my younger sister, roommate, and friend, but I’ve been completely blown over by how many people have donated to our team!

My roommate found out that before Benlysta was approved for lupus last year, there hadn’t been any new drugs for lupus in 56 years.  You know what’s happened in that time frame?  Vaccinations for polio, chicken pox and meningitis have been developed.  We’ve cloned sheep and transplanted hearts and livers. (And by “we,” I mean people who are actually good at Biology.  Although I was there in spirit.)  We’ve created embryonic stem cells out of human skin cells.  Al Gore invented the Internet.

And yet they couldn’t even approve one drug for lupus.

Rocio thought this was completely ridiculous, so she went online, found a lupus walk taking place in our area the next week, and signed us up.

Image
Shelbey (middle), Rocio (right), and I pause for a breather during the (extremely intense) walk.
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Sisters casually posing in front of a bunch of tall buildings.

Rocio, Meeting Planner Extraordinaire, is dying to get on the committee for next year.  She was already sprouting ideas for next year as we were on the walk.  (It’s an occupational hazard.  We tend to do this at every event we attend.)

I was surprised by how many people showed up!  There were so many volunteers. It was really heartening to see so much support for everyone.  Everyone was there because they are people who are either living with the disease or the friends and family of someone with the disease- which is just astounding.  It really puts into perspective how many people lupus affects.  You could feel the love throughout the day.

Speaking of feeling the love, I really appreciate all the support everyone has given our team.  To date, you’ve helped us raise over $1,000!  I knew I had supportive family and friends, but you’re all fabulous for coming through on such short notice.  I was just expecting to walk with Rocio for fun, but you all turned it into so much more and it makes me feel blessed to have you.  I love you all!

As a thank you, here’s a dog that went around the walk wearing butterfly wings:

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Meghan Works in France

The Meghan, 1 Comment

French Word(s) of the Day: Je suis toujours en vie (juh swee too-jur on vee)- I’m still alive

It’s been so long that I’m sure some of you are convinced that I went back into the hospital/ have been kidnapped and sold into slavery.  Fear not!  Je suis toujours en vie.

My neck finally decided to start working again on Friday, which was good.  My doctor told me that stress was making my lupus act up and that I should be “all good” now.

It was quite the event-filled weekend.  My friend MJ, Théo and Théo’s dad all had birthday parties this weekend, so my days were spent recovering.  They were mostly in French, and I found that I now understand people when they speak in French.  I no longer have the deer-in-headlights look.  Sometimes, I can even respond properly.  Successsssss.

I started my internship today!  I wrote an article that can be found here (though will probably not interest any of you… look at it solely for the byline): http://www.editorsweblog.org/newsrooms_and_journalism/2011/03/bbloomberg_lpb_the_success_story_that_ke.php

In my excitement, I forgot to properly cite my sources, so anything that says “according to” has been added in by my editor.  Oops.

Everyone was really nice.  My boss took us all for lunch at a cute cafe to welcome me to the group.  Everyone speaks English, but we do sometimes translate French articles/ have to communicate with the French IT guy.  I was misinformed about the French levels.  I’m not sure how good everyone’s French is, but I do know that many of them at least can understand it.

My neighbor and I had to have a talk a week ago when she decided to turn on her television at one in the morning.  She answered her door naked (why?!) and stood behind the door the entire time glaring at me.  I wanted to say, “Look, you’re the one who decided NOT to put on a towel or something before answering the door.”  Instead, I just ignored it and continued to talk to her as if she were fully clothed.

She unwillingly agreed to wear headphones if she turns on the tv after midnight.  This really means that she has just lowered the volume slightly.  As I can now sleep, I don’t care.

I’ve also started classes.  The infamous Madame Dubois is baaaaaaaack.  She seemed excited to see me, and there ARE other Americans in the class, so I’m hoping I won’t be attacked this semester on behalf of my country.  You all are hard to defend sometimes.

I’m off to analyze some poems in French.  A student’s work is never done.

Pain au chocolat count: 58

Just A Normal, Everyday ER Visit

The Meghan, 2 Comments

French Word of the Day: Urgences (er-jaunce)- the ER

This is a bit long, so I littered it with pictures to entice everyone.

I am myself, so it was only a matter of time before I ended up in the ER.  Quite frankly, I’m surprised it hadn’t happened sooner.  I’m not exactly good at performing tasks like walking in straight lines.

The day before my visit, Sunday, was actually fairly normal.  I did yoga and then Arnaud and I wandered around Monmartre.  Here’s a bit of Sacre Coeur:

My picture focuses on the Merry-Go-Round.  Clearly the more important of the two visual objects.

We went behind the basilica and I found this building:

I assume it’s the Rectory… but you know what they say about people who assume: they’re always right.

We walked just a few blocks away and found a street littered with sex shops.  I thought its positioning was completely appropriate to one of the most well-known religious sites in the world.

This was on the street, but has nothing to do with either sex or religion:

For those who can’t read it, it says: “Bakery, Patisserie…  GREEK SANDWICHES!”

Only three things I’ve been trying to find in the same place for my entire existence.  I absolutely had to see the inside after such a sign.  I was pleasantly surprised to find this:

You see that and you think to yourself, “Okay, I’ll let you offer me Greek sandwiches too.”  I didn’t actually buy anything, but now that I know where I can find pastries and Greek sandwiches in one building… I probably still won’t go there.

So Arnaud and I parted ways and I reposed a bit before attempting to go to sleep.  I decided to be really good about it and go to sleep at 11pm.  My internship was the next morning at 11am.  I was fully prepared to get a proper amount of sleep.

When I lied (lied, not laid… hens lay, people lie… must remind self every time I write this) down, my neck began to hurt.  I couldn’t move it.  It felt like someone had taken a bat and struck it repeatedly.

I’m a bit forgetful sometimes, but I think I would remember someone hitting me with a bat.

To make matters worse, my neighbor decided this was the night she wanted to watch her television.  It wasn’t too loud, but I have supersonic hearing that magnifies when I attempt to sleep.  I can hear a pin drop in the next house over.  I let her watch for an hour, but then decided I’d had enough and banged on her door.

She didn’t respond.  I got tired of knocking and attempted to lie down with a sweater over my ears.  When that didn’t work, I banged on the wall.  And then again.

I went back out and banged on her door again.  At 3:30 am when I was starting to worry she had been murdered, she woke up and was all “Oh, do you want me to turn down the tv?”

No.  I’m just knocking on the door to ask for a cup of sugar.

My shoulder didn’t want me to sleep… even though I had complete silence.  The next morning I trekked to Shelley’s office and collapsed in it and said something along the lines of “No sleep.  Need sleep.  Pain.  Hurt.”  She called my lupus doctor, but he decided to go out of town this week.  I’m sure he and my lupus planned this together.

We went to the ER where they gave me pain meds and a really hot doctor asked me questions about my shoulder.  He’s convinced I pulled it doing yoga.  I’m not sure I agree that something I’ve done 4 times a week for a year without any neck problems just decided to hurt me, but then again, I don’t have a medical license.  The lupus doctor we saw today didn’t think it was lupus either, but he’s contacting my real doctor and letting him know.

The ER visit only lasted an hour.  I was impressed.  I don’t think I’ve ever had one under 5 in the US.

They gave me more pain medication and I was able to move my left arm properly.  Always a joy.  I then went home and took a much-needed nap.

I told Théo why I hadn’t been able to go to my internship, and he brought me these:

(Yes, that is a Sox cup for a vase.  Vases weren’t my main packing priority.)  This makes the 3rd bouquet of flowers I’ve ever received from a guy, so I was most pleased.

He also brought and made me dinner, which was nice to not have to worry about.

Now I’m just chillin’ and restin’.  Shelley has ordered me to take it easy for the next few days.  I feel much better already, but she doesn’t want me to overdo it by starting my internship tomorrow, so I’ll wait until next week.  This means it’ll extend into my Spring Break, but as I haven’t booked anything yet, I’m not worried.

In my boredom, I have made a twitter account.  This is mainly because I’m utterly convinced that everyone in the entire world needs to hear every thought that crosses my mind and because I want to feel like Taylor Swift and I are friends in real life: http://twitter.com/#!/megselise I’m willing to follow people to make it look like I have real friends.

Not sure I’ll have much to say in the next few days, as I plan on being boring.  I am feeling better though, so no need to worry!

Pain au chocolat count: 56