Oh F*! I have lupus

When I got my diagnostic, it felt as if my boat capsized. I had been feeling down for over a year.

Before that, I was told that I was depressed, and it sure felt like it. No energy, loss of hair, dark thoughts, piling up pounds while I was never snacking, I was a subbing teacher for pilates classes at the local gym and I was biking to work. None of these made sense.

I woke up tired and went to bed exhausted. I was not happy, and I was physically hurting. Calves like stones, pounding headaches, serious memory loss…

I did not tolerate the Australian sun and would wear rashes on my face all year round, with only weeks of recess. Then I got thyroid problems and they thought it was the key. Months of painful and costly analyses later showed that there was nothing to be fixed there.

Anyway. When I finally got diagnosed, I realized that all this time when I thought I wanted to put a name on my tiredness and my fake-looking symptoms, I was lying to myself. I wanted to be cured, I didn’t need to know what I had: I just needed the doctors to put a name on my disease so that it would come with a list of pills. And a manual for an easy fix.

Well, ironically enough, I got tested for the disease while in the USA but it came back negative. I guess my doctor got a good hunch and I was already starting it. I also have published on Lupus in the past, with my former boss Patrick and a medic research team from Yale. 

So I knew from day one that there is no cure. I also knew that the disease ranges from a simple skin bother to a life-threatening condition. Which one would be mine? I have a truly beloved husband, whom I’ve shared half of my life with now, and my entire grown up life. I have two little kids who need a lot of energy, no a lazy-‘cause-hurting, always-on-the-couch-with-a headache-mom. 

So my life capsized just like one of these little 420. You see the signs and know that might happen, and all of a sudden you’re in the water! And like these funny little boats, if you react quickly enough, you can turn around pretty easily. Just push through, you get a bruise on your arm but you can breathe again. And in no time you’re back on your way. Although I have a rather severe form of Lupus, I am very fortunate to also have the kind that works with flares and remissions episodes. I’m mostly ok, and only sometimes really bad.

My doctors are great and found me drugs that not only help me with the symptoms but also don’t have any side effect. Another wonder presented to you by medical research! I have resume attending Yoga classes, and teach more pilates classes to keep my muscles strong and slow down nerve damage. I’ve learned to stay home and go back to bed when I need to. 

Nicolas is a champ and helps me to get through anything. Talking through what’s happening, being a great dad and posing as the family chauffeur since we arrived in Australia. I didn’t like driving a stick on the left before, but now that I’ve lost my deep-vision, I’m even a worse driver and a potential liability on the road. Nico deals with my students when I have headaches or worse and I’m stuck in bed. 

When I’m not sick, I feel fine. When I’m sick, I’m grateful to know remission will come. I’ve read about Lupus patients who have been in remission for 15 years and I’m hoping to become one of them.

Autoimmune diseases are really cruel ones. Attacking your own body is not cool, and no fun. Having two friends affected by multiple sclerosis, I think a lot about MS patients. While some go through much-welcome remission phases like I do with my Lupus, others only go worse gradually.  But with time, it always gets worse for both categories. They cannot turn their boat back up, or not that easily anyway. But researchers make serious progress on auto-immune disease these days. Fancy a donation? MS is a great research cause… Just saying.

L’annee 2013 et debut 2014 en bref, et en images. Et en Francais pour changer!

A la demande generale, un apercu en Francais pour la famille. Mais j’ai la flemme de trouver les accents sur mon clavier americain, donc il faudra lire un texte un peu desagreable!

2013 a ete a la fois tres dure et beaucoup plus facile que 2012. Plus dure pour la famille Francaise, et c’est difficile de se sentir si isoles et si loin de tout le monde. Impossible de rentrer pour une urgence, bloques par des papiers d’immigration qui nous interdisaient de voyager hors du pays. Des mauvaises nouvelles en pagaille, des problemes de santé pour tout le monde, la merde quoi… Et puis meme quand il y a des bonnes nouvelles, c’est nul de ne pas pouvoir etre la pour les partager.

Mais cote Australie et nouvelle vie, 2013 a ete nettement plus sympa avec nous que 2012.

Un nouveau boulot pour moi, Nico et moi dans un nouveau batiment de recherche flambant neuf, une nouvelle adresse perso dans un quartier sympa pour toute la famille.  Bon, on a re-demenage encore depuis et j’ai l’impression de vivre dans les cartons en permanence, mais on a enfin trouve un quartier qu’on aime, et garde nos voisins sympas dans notre carnet d’adresse ce qui est une amelioration assez dramatique de notre vie sociale depuis notre arrivee!!! 

Soiree cinema chez les voisins

Apres midi jeux au parc du coin avec tous les voisins

On s'installe enfin, et apres 2 ans ici je dis enfin aux gens que je viens de Brisbane quand on me le demande (ce qui prompt d'autres questions sur mon accent bizarre; mais enfin la maison pour le moment, c'est Brisbane).

Mes amis Americains et Parisiens me manquent. Ne pas elever nos enfants avec leurs cousins et grands cousins est un peu triste. J'ai toujours du mal avec l'absence de culture, la moyenne intellectuelle locale-tres basse, le prix des restos (je parle meme pas du rapport qualite-prix) et la mode du Queensland, mais avec le temps on s'habitue a tout...

En bref, les enfants grandissent super vite, Tiare a commence le violoncelle, la chorale, quitte la chorale, change de violoncelle,  commence a jouer au netball et Antoine a commence le foot et la gym. Ils ont un accent un peu tarte mais rigolo; pseudo-british-plouc sorti tout droit de "peppa pig" ou "Charlie and Lola". 

On a vu encore plus d’animaux australiens, on est retourne a nos endroits preferes et on a visite des nouvelles plages:

Moffat Beach, Noosa, Maroochydore, Tangalooma, Stradbroke Island.

On a conduit sur le sable (merci Aaron), rencontre des gens supers sympas, fait des pancakes et des cupcakes pour lever des fonds contre le cancer du sein, j’ai visite Melbourne en 2 jours. La vie sauvage locale  a Stradbroke Island est un peu dingue: on a vu des dauphins sauvages, des requins un peu bizarre qui nageaient dans les rochers a moins de 2 metres de nous, des raies mantas plus grandes que mon canapé et des tortues de mer qui avaient l’air furieuses qu’il y ait du courant dans les rochers.

On a suvecu a de nouvelles pluies tropicales, de l'eau qui tombe sur la ville comme si le ciel s'ouvrait d'un coup, et des nuages gris qui restent pendant des semaines jusqu'a ce que la riviere deborde.

On a appris que les dugongs sont plus proches de l’elephant que du dauphin et ne retiennent leur respiration que 3 minutes max, ce qui expliquent qu’ils broutent si proche de la surface. On a vu des lezards a langue bleue dans notre jardin et ailleurs; des tonnes de perroquets et d’oiseaux etonnants de toutes les couleurs, ainsi qu’un Lace monitor dans les arbres. Le genre de vie sauvage sur laquelle Nico et moi on s'exctasie avec precaution -comprendre a 3 metres minimum en disant "oh, ah" qu'est ce que c'est? Ca a l'air empoisonne" pendant que Tiare nous regarde avec un melange de pitie et d'amusement " c'est un Lace monitor et ca mange que des souris maman". Ah, ok.

On a teste le Vegemite (et sans surprise, c’est degueu, comme on pouvait s’y attendre), et fete Noel avec un arbre en plastique et sans neige (ni dinde) pour la deuxieme annee consecutive.

On a regarde des feux d’artifice tires du bord de l’eau, a Brisbane et a Stratrboke. L’annee 2013 a ete l’annee du spectacle pour enfant, et le premier casse-noisette familial. Brisbane est une ville provinciale et pretentieuse et qui se dit culturelle, mais en fait il n'y a rien a voir a part les spectacles pour enfant. Alors on y est alles!

On a commence a monter un plan d’attaque pour notre voyage a Uluru avec Kathy, et possiblemeent notre prochain Noel au Vietnam, ce qui seraient nos toutes premieres vacances-voyage exclusivement a quatre.

Et on a presque pris plus de vacances cet annee qu’en cinq ans aux Etats Unis. On s’apprete d’ailleurs a bloquer l'essentiel de nos vacances 2014 pour un retour trois semaines vacances a Paris (et Pau), une semaine de boulot en Espagne.

Avec un peu de chance on vous verra tous la bas, notez les dates: mi Mai-debut Juin!!!

Update!

 
Hello folks,
I haven't been doing a good job with this blog, for let's see... The past 7-8 months?

Well, the past year has been crazy... Not busy. Literally CRAZY. After Kathy and Ne left, Nico settled down in his new job but moved lab location; I got a new job, a new grant, a new lab; we moved to a new house, Tiare started a new instrument -Cello, Antoine started a new language -Spanish, and we all filled our Permanent Residency paperwork.

All this was done while overseas, my mom bravely fought Lymphoma and won. I'm so proud of her, love you mom!

We also made new friends, not as good as the old ones just yet ;) but promising! I wonder how long they'll be our friends if they read this :)

Meanwhile, we had Nico's family visiting. We've been to Noosa again and to Tangalooma. We fed the birds and saw more koalas and went to the beach, and BBQed.
We're blending in the Aussie landmark and lifestyle as much as possible, all for the best. Kids have "mates" and sleepovers and playdates, we have a favorite coffee shop and a favorite bakery. As close as it gets to call here home!

I'll try and update soon the "Kathy's trip" part of this blog. The reef is calling me again, and I'd like to share some pic's with everyone. Next on my list.

For next school vacation, we plan to fly out to Uluru then rent a campervan and hit the road! Night sky are just amazing here and I'm very excited about taking the kids camping for the first time.

Until the next time, good da' mate!

Vacationing with Kathy, part1/4- Noosa

My dear friend Kathy and her lovely daughter Nee have been visiting us from the US. Although I could not take enough time off to spend 2 full weeks with them, as I was sadly tied up with some work-related chores and travel, we managed to get away a couple of times and enjoy the beauty of Queensland.

I always enjoy having visitors, first because it’s fantastic to have your friends around, second because they provide a great excuse to drink  get active and visit places.



Our first trip, almost right off K&N’s plane, took us to mythic Noosa.  We’ve been to this famous beach before, and loved it. Located only 2hrs drive away from Brisbane, Noosa is a little corner of paradise. People judge it harshly around it; stating that it’s not a party town and it’s full of old-people, tourists, surfers, and quiet-nature lovers.

Well, guess what: Nic is a surfer, Kathy is a birder, kids love quiet beaches, and I’d rather spend my vacation in Cape Cod than in Miami.

So Noosa was the perfect destination for us.

A lovely boardwalk takes you from the beach, almost in the center of the city, to Noosa National Park. Wandering in the park, you get nice views of the beach, deserted creeks, and can spot koalas in their natural habitat. The water was nice and warm, although we got stung by unidentified jellyfishes (one fellow swimmer, who admired Kathy's "bathers"suggested it may be a blue jellyfish). Fortunately enough, Nimrod resort where we stayed had a swimming pool and our flat had a jacuzzi on the roof, both stingers-free!

On the way back, we stopped by the Australia Zoo. I’ve been warned before that it’s a mausoleum to Steve Irwin, AKA the Croc hunter. But Crikey! Nothing can prepare you to this level of adoration. His pictures or videos are at every corner.  The Zoo is also a commercial springboard for Bindi and her merchandizing.

The Zoo itself is OK, but you sometimes have to walk for 15 minutes between two areas, with nothing much to be seen in between. For the very high price paid at the door, it’s a little bit disappointing to “arrive in Africa” to see 3 zebras, 4 giraffes, and 1 rhino… The few kangaroos we tried to approach were really aggressive, most likely as a natural reaction against all the tourists chasing them all year round. On the other hand, the shows are AWESOME (yes I know, I’m a sucker for shows).

We saw magnificent birds that are so tamed they fly wherever they're asked to and crazy zookeepers entering the croc's water to demonstrate the ferocity and unexpected nature of crocodiles.
They pretty much make it an educational show: they teach you what not to do near water as a tourist, while demonstrating it to show you how fast the croc will get at you and bite/eat/kill you if you go back drunk to your hotel room at night and decide it's a good idea to take a shortcut through the swamp.
I was very impressed, and decided at this very time to try my best and never experience this first hand.

The Zoo is overall a nice park, and an agreeable place to be on a sunny day. They offer all kind of animal encounters that could be really cool (com'on, of course you want to take a cheetah for a walk or pet a tiger!)

So if you have kids, go ahead and support the Zoo by buying  Bindi's wildlife adventures (for little girls) or by subscribing to Crikey! a very cool kid's magazine.









Next destination: Far North Queensland! Mission: see more crocodiles, but this time in their natural habitat... (secret objective: see and not being eaten)

the 10 things I don't want to do in Australia, or the reverse bucket list

Hubby and I are biologists. The kids are just, well... kids, and thus they are curious. Everyone in our household loves to watch the Smithsonian channel, BBC documentaries, or National Geographic.
So this morning we all ended up glued in front of the screen, watching "deadliest animals: Australia".

After my top 10 of places to go to and see, I now have a top 10 things not to do. Or to be more accurate, mostly 10 things to never meet.
I'm really mad at myself for being such a sucker for documentaries, and for staying there watching what I could meet in the near future. What would be interesting from my couch in Connecticut, USA, scares the s* out of me and makes me look under my chair before I sit here in QLD, Oz. 9 out of 10 of the worse animals can be found in Cairns area, where I'm heading to in a couple of weeks, and most of them could be enjoying my backyard's shade right now anyway.

Like the fangs? Remember Harry Potter, the scary scene? 

1- meet a red back or a funnel web or any other nasty spider. 
High priority on the funnel spider, "which likes to wander in houses and is very aggressive when spotted or disturbed. Fangs are so long and strong that you may have to take it out from the bitten limb where it stays attached". Seriously? I'm SO calling the exterminator on Monday to come and check our basement.

that's right, I'm on a wall. Inside.

2- have a snake in my house. According to the tele and the internet, brown snakes are shy, but if they feel threatened, they will attack and strike. Several time. Like 8 times in a row. Again: seriously, wild life? And they're known as one of Australia’s most deadly creatures. Now, that's reassuring. They usually come after mice or rats, so I hope that's an incentive that the kids will understand when I tell them not to leave crumbs and cookies behind them in the playroom.

Brown snake wondering if he would like to get out of
 his way and kill you, or not

tiger snake

3- meet a snake in my backyard. Too late since I've already met a tree snake, but let say it doesn't count since if it would bite us, that would be painful but harmless (although I may die from a heart attack, or collapse from a combination of panic attack + my brain exploding from fear at the same time).

4- meet a snake in the wild while camping or hiking. Enough with the local competition, let's enter the olympics of disgusting creatures. The tiger snake is known as one of the deadliest snakes in the world. If you don't get anti venom within 6hrs, or if you're weak, your chances of survival are 50%. Hum, let me think about it, 1 in 2, feeling lucky today, wanna bet? Just to be clear, the specie is protected and if you hurt them in any way, you'll get fined. $4,000 that is.

5- get a skin cancer (did you know that here in QLD we kinda have a world record for skin cancer?). You never know, while I'm out in the bushes, looking for reptiles,...

6- get caught in a fire storm (like #5, nothing related to the documentary, but I thought I'd throw it here because I don't really feel inclined to go there).

7- step on a stone fish while on the GBR. Let's be clear. I am paying good money to share one (happy) day of Nemo's life (that's right, the little guy from finding Nemo). Not to visit Cairn's ER. Apparently, the stone fish spines has no trouble piercing neoprene shoes. Again, a precious piece of info to bear in mind. NO need to spend money on ugly protections that will not save you. Same goes with box jelly fishes. As much as I enjoyed the jelly fishes' special exhibit at Mystic Aquarium, this is as close as I want to get from a stinger.

You can't see me!

8- have an unexpected encounter with a shark. Not a bull shark like those who enjoy swimming in the Brisbane river, I'm talking great white. Knowing that I don't ever plan to go shark feeding, I think it's safe to say that any shark encounter while in the water will be considered unexpected and thus not acceptable.
New studies have shown that the great white have a different strategy when attacking a seal or a surfer. MEANING, wait for it, that the myth of them attacking humans by accident is BS! Let's just not try and test the theory, I really have no interest in proof-of-principle.

this awkward moment when you wonder why
you put yourself in this situation

I believe I can fly

9- meet with a crocodile, a gator, or any reptile other than a gecko or a lizard and other than in the zoo. Again, nice record for Oz, with the biggest crocodiles in the world. Affectionally called salties (Aww, so cute).

the only way I like my 'gator (Missiessy)

the most feared Taipan! 

10- did I forget to mention something about snakes? Because here, "we" have the record of the most poisonous snake in the world, that's right! The Taipan, that leaves in central Australia (THANKS GOD, I'M SO NEVER GOING THERE!) reaches 2 meters in length and the venom injected in a single bite is enough to kill 100 adult humans. Good to know.






If you'd like to know more, talk to the expert.
Their "did you know" section is kinda cute, almost gives you the exact chemical composition of what will kill you...