More Committee

April 11, 2013 The Meghan3 Comments

French Word(s) of the Day: faire des progrès (fair day pro-gray)- to make progress

There has been another walk committee meeting. They’re all women after my own heart- almost everyone brought food. They also made plans for bringing more food next time.

I promise that food was not the only thing we discussed. Although food takes up 75% of my thoughts, it only took up about 1% of our committee time. Clearly, I’m not the one who runs the meetings or this percentage would be higher. “Yes, I like what you’re saying about the runners, but did I hear you say you know how to make the best apple cobbler? I think we’ll need to test that next meeting.”

I continue to be impressed by how on top of things everyone is. It’s the opposite of those awful school projects where only one person (usually me) did all the work. People do what they’ll say they will, and then they do EXTRA things on top of that. I’m really not used to other people I’m working with being responsible. (Other than the people at my job. But even then, only my direct team. Not anyone else’s.) I keep thinking there’s going to be a catch.

We’ve gotten a solid head start from last year. The race route has been chosen! (Again, I will not be running. I have a theory that you should only run if you’re being chased or have to go to the bathroom.)

The person on the other side of this wall has a reason to run. — The person at the other end of the stone tunnel has a reason to run.

With all these fabulous ladies hard at work, I’m pretty positive this year will be the best yet.

We’ve been considering some new ideas for spreading the word about the walk, and there’s a chance we might need some volunteers. I’ll keep you all posted!

Trypanophobia

April 2, 2013April 3, 2013 The Meghanlupus, needles, recovery7 Comments

French Word(s) of the Day: une aiguille (ooon A-gwee-ah)- needle

This recovery time has been far less eventful than last time, thank God. With the exception of the elephants, I haven’t had too many symptoms other than fatigue. Although, my mother and sister can attest to this, a shot of espresso will get me going for a short while.

Side note: I quite frequently mispronounce words. I will forever pronounce “espresso” as “expresso.” Am I alone in this? I see the “s”, I know it’s there; I’m just choosing to ignore it.

But back to that whole lupus thing (she wrote casually as if it was no big deal), I did still have to stop by the lab yesterday. I have to get my blood drawn twice for every chemo session. Once 3-5 days before treatment to make sure I’m healthy enough to receive it and once 10-12 days after to see if it’s working.

Every time I mention this, someone says, “Ew, I hate needles” as if this fear is completely unusual and unique to them. I have yet to meet someone who says, “Oooo! Needles! I love getting stuck. You know what’s even better? When they miss and have to stick you more than once! It’s like Christmas and Easter had a love child.”

Fun fact I learned while looking up the word of the day: there is a word for fear of needles (trypanophobia), but not one for love of needles. I suppose you could say trypanophilia, but that’s not a word recognized by the dictionary… Probably because no one has ever needed to use it.

This fish is paralyzed by his fear of needles.

You really do get used to them after awhile. You don’t like them, but they no longer cause the dread they used to.

I’ve been going to the lab so much that they know me there. They’ve started sharing lab gossip with me. That’s right- I’ve made it to the elusive inner circle. You know you’re jealous.

EDIT: I’ve gotten a lot of questions about where I’ve been getting all the animal photos. I live a few blocks from the zoo, and it’s one of my favorite places on the planet. I have about 50 billion photos stock piled from my visits, so you should expect to see even more animals in the future (and possibly some more Paint ones). All photos are mine unless otherwise stated.

Les Éléphants

March 26, 2013March 26, 2013 The Meghanchemo, elephants, lupus5 Comments

French Word(s) of the Day: les éléphants (lays el-eh-fawn)- elephants

The second chemo session hit me a little harder than the first. I had a headache before it had finished, so I’d already guessed this might be the case.

I woke up the next night feeling like an elephant was sitting on my chest. While elephants are my favorite animal, I’d much prefer it if a much smaller animal was sitting on me… like a bunny.

It turned out to be intense heartburn, and I’ve been banned from eating chocolate and spicy foods around chemo time and had my medicine increased. (I’m allergic to some forms of heartburn medication because I’m allergic to everything- including myself- so my doctor had a hard time figuring out what to do about it.)

That’s right- chocolate. OH THE INHUMANITY! Take my arm, my leg, my hair, but not my ability to eat chocolate!!!

Don’t worry, everyone. It’s only for about 3 days after chemo. I’ve already had some chocolate since then. Actually, I’ve had a lot of chocolate. And cake. And chocolate cake.

I could tell I looked bad at work on Thursday because everyone kept asking me if I was okay. Having elephants on your chest is serious business. My boss asked me if I wanted to leave for the day, but if there’s anything more stubborn than an elephant, it’s someone with an elephant on their chest.

For everyone who’s worried I’m pushing myself too hard, I managed just fine. It was an easy day and I went home and rested directly afterwards.

Thursday was my only truly bad day. I’ve been a bit tired, but everything’s been manageable. I think I’ve figured out all my food triggers. (My food triggers: anything that tastes good.) It’s very scientific, being sick. Lots of trial and error and experiments over here. I’m considering getting a lab coat to wear around the house with “It’s always lupus” written in purple script where the doctor’s name typically goes.

Everyone has just been so supportive throughout everything. I do read everyone’s comments and I appreciate them. Among other things, my aunt got me ginger beers for work, my lovely godmother made me my own meal at a party on Sunday, and my parents and Alyssa came over to help me clean. I haven’t really had the energy to tidy up, and it’s been LOVELY to have a clean, put-together room. (I have room to dance around in my purple tutu!) My family and friends are one fabulous bunch, let me tell you.

Gros bisous!

Le Deuxième

March 20, 2013 The Meghanchemo, lupus12 Comments

French Word of the Day: deuxième (dooze-E-em) second

Well folks, treatment number two has arrived! Both my parents have joined me again. My mom brought cookies for all the nurses in the infusion lab (for bribery to get the best chair, I assume. She’s a tricksy one, that Siobhan). The nurses loved the cookies and have been extremely nice (well-played, mom, well-played).

To be fair, they were nice last time too.

I have been warned several times that the effects are accumulative, so I’ll get at least as sick if not sicker this time- but also assured that sometimes people don’t have any issues at all. (“It’s probably going to SUCK, but it could also be okay. Who knows, right?”) Gotta love how forthright the medical community is. I’m going to be the first person who gets less sick each time. By the sixth time, the chemo won’t even enter my body- it’ll just go straight through.

Well, I’d love to stay and chat, but we’re busy watching TV shows about polygamy. (HBO’s Big Love anyone? I think we’ve confused everyone else in the room with our running commentary. “Wait, he’s getting ANOTHER wife?” “Oh, she’s so gonna kill him.”)

Side Effects

March 13, 2013 The Meghanmedicine, side effects5 Comments

French Word(s) of the Day: les effets secondaires (lays eh-fay say-con-dair)- side effects

“The remedy is worse than the disease.“ – Francis Bacon

That’s right; I just quoted Francis Bacon. I mean serious business over here.

It’s that time that every sick person knows and loves: side effect time! Medicine is always fun because it likes to go above and beyond curing you. It’s like it’s saying, “I know you just want me to solve your issues, but I really want you to know I’m here and that I care. How about a headache with some dizziness?”

I had a fun start to last week. My medicine, in addition to keeping me awake, also made my knees, face, and hands swell. As you can imagine, this made sleeping even easier and gave me an incredibly amount of patience in dealing with difficult people at work. (I don’t think I made anyone cry, but I may have responded with just “No.” to several requests.)

The swelling has finally gone down this week. My doctor decreased that particular medication. She told me that she’s extremely impressed with how low I’m keeping my salt intake. I’ve been bragging about this all week. “Oh, you got a new job? That’s all right, I guess. Me? I’m just being a rock star over here, consuming record low amounts of sodium.”

Last Tuesday, I woke up covered in hives. I thought to myself, “Joy beyond measure, I’m allergic to one of my medications.” I had an emergency doctor’s appointment on Wednesday morning to figure out which one. It has since been found and replaced with a new medication that looks suspiciously like yellow finger paint.

Yellow finger paint or medicine? You decide.

I told Rocio that it’s been making me a little dizzy, and she said, “Of course it is, you’re ingesting paint.” I’m not going to say that I don’t trust the medical community not to prescribe me paint, but I’m not not going to say it.

With all the swelling and the rashes, getting ready has taken double the time. My hair has begun falling out in tiny chunks which has added to my slowness (and completely clogged our shower drain. You’re welcome, Rocio). Don’t worry; no one has any idea. I’ve got mad thinning-hair-hiding skillz. I’ve been wearing my hair curly, so everyone just assumes I got a perm.

You should all be aware that I’m now going to be really late to everything. This is completely different than before when I was only kind of late to everything.

The Weekend After

February 25, 2013 The Meghan4 Comments

French Word of the Day: rester (res-tay)- to rest

My couch and I have been hanging out this weekend. Occasionally, someone joins us to watch movies. (Rocio’s coming back to a Netflix full of recommendations for chick flicks instead of horror films. That’s going to be a fun surprise. Maybe there’s one that mixes the two genres? I’d watch that.)

I didn’t get as sick as I thought I might. I started having stomach pain on Friday night and it persisted every time I tried to eat something. (I try to eat things a lot.) My stomach and I finally compromised on saltines and bananas.

I was still a bit nauseated when I went into work today, but I found my magic drug: ginger beer. It’s magic wrapped in magic. My stomach has been behaving since the very first sip. This worked well because it was my coworker’s birthday today, and someone brought in cake. I can’t turn down cake. That’s just wrong. (Wanting to eat cake after being nauseated earlier is a completely normal response. Probably.)

Overall? Not too bad. The CellCept was way worse. I can do this five more times.

C’est ici!

February 20, 2013February 20, 2013 The Meghanchemotherapy, lupus, lupus nephritis15 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 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.

Auto Immune Diseases Are Putting A Damper on My Social Life

February 12, 2013February 17, 2013 The Meghan4 Comments

French Word of the Day: non! (no)- no

Lady Gaga is currently suffering from inflamed joints that have made it too painful to even walk. (Sound familiar?) She’s cancelled her Chicago shows…. as in the show I was attending.

She tested boarder line positive for lupus in the past. I wonder if we’ll hear an announcement in the future?

But I am upset about the concert being cancelled. I feel for her, but I still can’t talk about it. As Legolas said:

Scheduling Appointments

January 28, 2013 The Meghanappointments, doctor8 Comments

French Word of the Day: incommode (awn-co-mode)- inconvenient

Because (clearly) I’m trying to use all my vacation days for 2013 before the end of January, I had another doctor’s appointment today.

My chemo sessions are going to be a bit longer than I thought. They’re a 6 hour affair. Why do they need 6 hours? That’s a good question. I’m guessing they’re taking me to a musical as part of the treatment. Everyone gets some chemo at intermission. (Sidenote: do you think my fellow chemo-ers would be receptive to a sing-along? I think I should bring my guitar.)

The sessions will start either February 6th (two days after my birthday- happy birthday to me) or February 13th. As soon as I heard this, I mentioned that I have a Lady Gaga concert on the 13th that I cannot possibly miss because, you know, I have my priorities straight.

I’m convinced that being a health specialist is the best job in the world; they never work. Trying to schedule an appointment generally goes like this:

Patient: Okay, I work Monday through Friday from 8 am- 5 pm, like everyone else in America. Do you have any times available when I’m not at work? Preferably 7 am or a Saturday.

Scheduler: Well, Dr. X only has hours from 2-3 pm on every 3rd Wednesday of every other month.

Patient: Seriously? That’s an hour, not hours. How does this clinic even make money? Do you only see 5 patients in total? I just don’t feel like this is a good business model.

Scheduler: So does next month at 2:45 work for you?

Patient: Not really. I have a huge presentation at work. When’s the next appointment?

Scheduler: 2015.

Patient: Next month at 2:45 is fine. I can find a different job.

Lupus patients see several doctors at once because our whole body is being attacked. You basically have one doctor per organ, plus your main lupus doctor. I have so many doctors that I constantly forget all their names. This only becomes a problem when one of them has to send a letter to another. (“I’ll let your dermatologist know. What’s her name?” “Um… I should know this…. It starts with a ‘W’? Does that sound right? To be fair, she doesn’t know my name either; she has to look at my chart to figure it out.”)

Trying to organize all these doctors has become a military effort, but I’m up to the task.

Half of the dots represent doctor's appointments, the other half involve food. — Half of the dots represent doctor’s appointments, the other half involve food.

Drop ‘Em

January 23, 2013January 23, 2013 The Meghanlupron, lupus, menopause3 Comments

French Word of the Day: la fesse (la fess)- buttocks

I’m sure you’re all looking at the word of the day and thinking, “Meghan, what?!” You now understand how I felt when the nurse came into my exam room with a long needle and said, “Drop your pants.”

I responded the only way I knew how. “I don’t think we’ve known each other long enough to take our relationship to that level.”

That’s right; today was menopause shot day. It actually wasn’t that bad, so I think I’m finally becoming immune to needles.

The doctor who came in was really excited about my lupus. He kept asking me questions about my past and sharing studies about lupus that the hospital had published. At one point, he called it all “fascinating,” which is just how you want to hear your medical history described by a medical professional.

I won’t start to see the effects until a few weeks from now, but I will be able to drink properly on my birthday. Three cheers for alcohol! (I haven’t been able to drink more than a glass or two since September 2011.)

This is my 100th post. I’m glad I was able to make it all about a deep and meaningful word.

French with an American Accent

Just Another American Francophile

Lupus