Ahh pains, when you hold us!

Yesterday: Saturday, beautiful day, not too much sun, a little wind, the perfect day for shopping, for the young lupus completely broken that I am. Direction the Four Times Shopping Center in La Defense, in addition there was not a lot of people, it's top shopping without jostling, except perhaps at the H & M swimwear department: 9 € a top and a bottom! But I have not cracked.

A few purchases and 2h later, Claudia was no more!!! I exceeded my "daily market quota", the famous 2h. Pain in the feet, calves, thighs, lower back, back, arms, forearm, shoulders, in short nothing escaped. But I wanted to persevere, or rather abuse, and I stayed 1h more: 1h of self torture. Where I really regretted not being back? When leaving the Castorama of the Four Times, the vigils prevented me from going out, because according to them I opened and stole a pack of screwdrivers. Oh my god I wonder how I did to stay calm, because that kind of accusations to the con, I usually get carried away quickly. Finally? No pursuit and of course I did not steal screwdrivers that people can be stupid sometimes.

The quota of 2h was largely exceeded with all these events: the time lost in Casto, the return time to go home. Finally on the way back, I spent one of my worst nights of 2010, with this shoulder pain in-su-por-ta-ble!!! I have often had this pain, it's a dog's pain, it's persistent, and the inspiration is even worse. I almost want to tear it away and it stayed until this morning.

This is the pain that I'm always afraid to have, so the feeling is not liveable! Nooo I do not abuse, we do not hold in place, we just want to close our eyes and hope that it goes back by reopening, but it's not so simple!

Plaquenil? It does not really affect me... A radio? We see nothing! A massage? It relieves the time of the massage, but when it stops, it comes back.

So where was I wrong? To have wanted to go out, to make my Saturday a banal day as for so many other people? Where I was wrong from the moment I exceeded my quota? Because if that's it, so stay at home, because going out for 2 hours of pseudo fun: so much nothing to do with his day, and stay at home. 

I just wanted to make me happy , it's not often that I go out, shopping is rare, and now 3h have completely broken me in 15! And after? We must lie to ourselves with these kind of little phrases that are supposed to cheer us up, like: "we do with!", Or, "we make go!"

I want to do "with", provided that this pain con fuse peace to my shoulder :(

And passions then? The hobbies?
At the end, we have the right to have what passion for having an LED? Well yes, because sport is a little dead, with our heart problems, asthma, joint problems and / or muscle, the less we do, the better we go! So what? Drawing and painting? I drew a lot at one time, but today I have very (very) badly the arm, fingers and wrists for.

So, writing? Same, as typing on a PC keyboard by the way, it hurts, it is tiring force. And like any activity that hurts, fatigue etc., it puts me in a state of atrocious rage, because things I want to do, but I can not! One of my biggest obsessions is to drop something on the floor , because it's quite an art of bending down without getting tired! lol ahlala Sad tragic world!!!

So, I found the picture. Reflex, and presto photos! It's not too tiring in itself, it's nice, and it's beautiful. But hey, it's mostly a solitary activity, outdoor, to practice in good weather.

Me: I would like to do a sport, any one, and go home without having the back fart and aches that will not leave me so soon. I wish I could write, by hand or on pc without hurting hands at the goal of a quarter of an hour.

I would like to do a lot of activities, and be in shape, at least a little more vitality, be able to get up from my seat without having the head spinning, a thigh that is "crack", a neck that hangs, a foot cramp etc. One of the hardest things, I think it's when I'm alone at home, with no activity to take care of: I start thinking about everything I could do, that I do not not.

The friends? lol let's talk! At the time "60mg cortisone / day", I had to make a cubic meter something like that! When you are fat and ugly, you represent no danger for girls of your age, we are nice full with you, ah yes :D

But when you go to 2mg / day because you have a cool hemato but crazy enough around the edges, and you lose in 3 months all the weight in excess, and you end up with a size 36 and 55kg for 1m65, and you can eat without getting fat, there is a problem for "girlfriends".

Because they have all grown, and I, minci... So it is based on criticism: "you are anorexic, you eat a lot that before us, at home you must make you vomit etc". Why do they think that? Surely because my dark circles disturb them ohlala! rings that many lupus have also lol and they know my dirty eating habits, and are perhaps jealous who knows. But there's nothing to be jealous of, I would still prefer with weight problems for life, and no LED.

And after, the disease? I could talk to them every day for hours, they are way too stupid or stupid I do not know, to keep 1 / 10th of the definition of "Lupus". Nah I'm not really surrounded, our reports is mostly based on bad reviews, but do not think that I let myself do, when it goes too far, I know open!

To summarize, I feel damn when it is ugly like today, that there is not much to do, or at least I can not do much. And this cold that hurts, which brings a lot of pain: it's not great. It's even downright depressing :-(

So: ideas of hobbies, for a lupus pseudo anorexic, according to these dear friends? (And no, I'm not anorexic lol I just found my body and metabolism before the cortisone)
Fatigue on the horizon!

I am a student, I work at night for the town hall of my city, with kids in "school failure". In 2 weeks, Saturday, May 29, we have a party, a kind of carnival, where we are supposed to parade, dance, walk in the streets of the city, from 12h to 19h.

Big problem: how am I going to do? How can I keep more than 1 hour to walk? From experience, I know it's useless to talk to my boss, because I work with one of my friends, who was supposed to know since 2002, when I told him about it, that I suffer from an LED. However, she "forgot" it, and when it was about a month ago she asked me what I had in the face (mask of the wolf), and that I replied that it was a lupus, she looked surprised that I did not speak to her before. Thank you for being my friend, it's great (pseudo) yupi friends!

So talk to the superior, even if I get along well, so that he understands nothing: no thank you.

People in general react to me as my father: According to him, I am in good health because: I get up in the morning, I shower, I feed myself, I have a social life. He does not understand anything, although he has been aware of my state of health since 1996. For him and for many people, since I found a normal platelet count following my removal of the spleen : all is fine But we know that no. The purpura was just one problem among many others, the e having platelet today, does not make me a miracle lupus.

May 29, I'm going to be broken, KO, crumbling, this fucking shit Saturday that's already getting on my nerves, because I know I'm not going to hold more than 1h, will sign my death sentence, oh yes it's going to be unsustainable, I can already see the back farting, limping, with my bones that will crack everywhere, ohlala...!

I have a cane, I use it from time to time, but I have never used it before them. I am afraid that my position and my skills will be challenged with respect to my health, especially that in June, we will have a meeting to find out who is left, and who will leave next year. I would be in my last year of BTS, a job of 2h / evening would be top, just to make me money but move a little too, but if they realize how much I can be limited in my movements, they may not want me anymore :(

It is unfair that the disease is so misunderstood. I do not even mention the fact that no one knows it, but those who know it, like my father for example, or some of my friends, ignore it. They have nothing to wank! (It's not vulgar! It's totally realistic, and therefore justified.

News and a sport to practice, even for us!
It is said that money is not happiness and it is true! Nothing would make me happier than spending a whole day in good health: by that I mean without pain or fatigue. It happens to me from time to time, but it's so rare! Once or twice a year...

Ahh when I hear some people say: "I'm tired, I spent the day to move in all directions, I'm exhausted", how I would like to be tired too for the same reasons and tired for doing things, and not dead "for nothing"! 

I have no friends, no one to talk to, talk about futile things like most girls of my age, no girlfriends with whom to talk to dudes etc. I'm not bad, I'm not so bad that nobody wants me. So what? The girls I was hanging out with do not want to go to school anymore because I have become too much of a watcher for the guys on the street, since I went from a 44 to a 36 (and 60mg of corticoids / day, at 2mg). I've "melted", and it bothers them: "Do you think you're at the beach to put on a tank top?", "Do you believe where to put a dress?". Frankly, if it is to hear such comments completely derogatory and useless, I still prefer to stay alone. I would say that it's people to whom I explained my health problems six years ago, and that except "and that's it, it's nothing like that!", I'm entitled to nothing other. Today, they do not even remember it.

You do not find that a little bit abused? lol it's stupid and foolish to be rejected because we're 55kg, whereas when I was 75kg, everyone liked me. My character has not changed so far, I am even more friendly and open today.

I'm ready to "lie", basically not to shout, to walk "properly" in public, people are stupid and suddenly are embarrassed by some attitudes that I could have , I never complained to my friends. But it does not happen! I must believe that I am not made to befriend people!

If I can not have friends, I must find myself a new occupation, something: cool, not tiring, which is an interesting minimum (at least for me). And I found! Fast no!

Did you see the ad for this new style of golf, the street golf, made in Decathlon? I cracked for 2 things: it's colorful lol, and: no need to bend down, nor farting back : just take golf ball with the club: there's a place provided for this purpose, nickel for people like us lol.

It's called "Ygolf". I tested, and I honestly found it fun, fun, and there are two clubs (to play 2), 4 balls, and a target / hole. It is light lol other good point, it is transported without being burst so far. Play this, in a large park with hills, in the early evening when it is always a bit warm, but the sun starts to leave: it is super nice and relaxing. It is a style of golf made to relax and laugh, very far from the classic golf! 

No need for superhuman strength, the balls are not rigid, the clubs are light, the carrying bag is practical. In short, I am happy, I will be able to practice a funny sport: street golf, within the limits of my state of health of course! 

I who complained a while ago of not having an occupation, I found one, which replaces a lot of useless things, and which fills my free time. If you have other ideas, just as tiring, I listen to you :-)
Back from holidays

How beautiful and magical these holidays! No problem, no confusion, and a pretty destination! Departure in the evening by car from the Paris region, for an arrival on Toulon early morning, to take the ferry that was to take me to Corsica: Everything went absolutely well, the road is long (+/- 800 KM) but arrived at km 400 problem! problem!

The speeds of my car have begun to let go. The 5th is in neutral, the 4th, does not want to engage lol and speeds are "wedged" without being fully engaged. Super hard of them pass, had to do both hands while trying not to break the box! It would have been more than tragic there.

I arrive somehow on the boat after having traveled 350kms like that. Leaving the boat it took me 15 minutes to put the 1st and so good! 

On Ajaccio, once installed, I call my assistance that sends me a tow truck right away. Super bad guy, who tries to make me believe that it's my clutch that has let go, and there, the bums start! We take my car to Volkswagen, who tell me the same thing. Except that I insisted on checking the oil of the box. 3 days to ride in a replacement car, 3 days to learn that it was "just" box oil! The emptying, the car rolled like clockwork and from there, that happiness in this holiday!

I love the beach! I was spoiled there : the beaches are beautiful there , the water is transparent / turquoise blue, it's superb! The sea is warm (warmer than cold!), And the beaches are for some very difficult to access by car (crevasses enermous ground, no tar etc) and suddenly, they are almost deserted! 

The views of the mountains are superb too. The fans of gastronomy will be disappointed by cons: the restaurants are 80% pizza and paws... bof we find all year round on Paris paws and pizzas lol. The rest of the holidays went well and I found Paris (too depressing) on September 4th, sniff! To speak health, no problem of the mask style of the wolf or others. Just the same huge fatigue and pain, except that, nothing to report, and it's pretty cool! I was able to tan, not to change the sun LOL, I have a hard time avoiding it oddly: p

What an absence!
I have been away for a long time from my blog, but there is an explanation for everything. First, my BTS (1st year), he was in danger lol I had about 5 months to complete 2 semesters of courses and homework because of my late registration. So, I was less often present behind the pc, hence my absence from the blog and its Facebook page.

The school year is over, I am pleased to announce that I have validated , with the small average of 13.5. Could not do better in 5 months lol I had too little time! But I'm already asking a lot of questions for next year! Still courses via the CNED, or alternation? Who says alternation, says school / work, and I'm afraid of the fatigue that it can cause, because after 2 weeks I know that I will be OK!

If you have any opinions or suggestions: I'm listening! Working with the kids took me a lot of time too with the extra hours , and end of year meetings, but all that is over too: Long live the holidays but, I still do not know where to pass them mine mdr ^^ (again, if you have suggestions.....!)

I had a few moments of tiredness, fever, re-tired, fed up sometimes too (if so!: O) but now I intend to take advantage of the 2 months of vacation to re-po-ser! Then, I would like to make a small reminder of Saturday: Lupine lunch , in a creperie in Montparnasse. It was nice like everything, I met in "real", great people and very nice! We put that back?
Not easy back to school

Back to school after the holidays was not easy! I missed a lot of my blog, and also my facebook page. In fact, I'm pushing, suddenly, I'm sick H24. For 1 month, I did not stop coughing, coughing. Accompanied by fever (once a week, it's accurate lol) and cramps with or without fever. Currently, the cough is almost gone, the fever less rarely (once a month), but the pain is more present than ever. About once a week I am stuck with pain, I can not even move a finger! If I lie down, only I can not get up. If they help me up, I walk like a granny, step by step, back all bent and it's far from glamorous! 

And it's a big vicious circle: I lie down to rest, but the more I rest, the more it gets worse. On the contrary, if I try to move, walk, it passes over the hours alone. But you have to have a lot of courage to get up and move while suffering martyrdom.

And if no one sees that I am alone, in my room, in the vegetable state that does not move, well I can spend 24 hours without giving news and no one worries XD! These months it's not going at all! So I'm hyper late course and homework, I missed the job too, it's pretty chaotic! 

I had not really had a big push since 2004, and here I must say that I am served! When I'm in remission I do a little anything. I go out, I'm having fun, I sleep if I have the time or so much worse, I rest more, basically I do not care at all : - / ben, we pay dearly after -_- "it will teach me..!!! I hope that you are well, that there are not too many thrusts in the air ;-) Give your news!

It's all arranged...
Since the beginning , I chained: a cold that lasts 2/3 months, an otitis that lasts 1 month, and more recently, a loss of 8 kgs in 10 days, I hallucinated. Things seem to be better now: otitis almost gone, the cold causing me more fever, I do not care, and I lose more weight! not at the rate of almost 1kg / day lol anyway!

That was the news "health"! In a completely different field: school, studies are going well. But it's a year more than stressful: exams in May loool I still have not 5 months of revisions ... finally manage to combine homework (there are 30 in all, I have already returned 13. ..) + internship + reviews + my job and it's not going to be easy! 

For the moment I'm just homework + job loool down revisions in the middle of December, and the internship, I should start it (if all goes well) from January: creation of an event (neighborhood party ) + creation of a "mini-journal". I would say more next time ;-)

Soon the holiday season: my friends, I would be absent from Facebook from Friday, and until next year lol January what: p because I'm going to Lisbon, for the end of the holidays year, even in case of snow, I think my flight should not be canceled, priority being given to departures. Departures on airports not "blocked" by the snow 
Pregnancy and lupus: Not so simple!

Hello everyone! Today I am going to talk to you about a topic that is very interesting for lupus in general, since about 9 out of 10 people with lupus are women. If I was so far away from my blog, it was not because I was fed up or more time. Simply, many events were chained, and not the happiest, this last year.

At the end of 2011, I learned about my pregnancy. Obviously it was wanted, no push in sight. I have just had ultrasounds every 2 weeks up to 22 / 23SA, because my anti SSA body being positive, it can affect the heart of the baby. After 22SA, it's every month until the end. At 24SA, I had a routine ultrasound. I have been told that since the last ultrasound (which had taken place 2 weeks ago) the baby had not grown at all, and that there was no longer a drop of amniotic fluid.

They send me home, just saying that it would not move, no improvement to hope for such a small term, and should consider the IMG. But 2 days later, I am taking violent epigastric pains. There I go to the maternity ward where I was being followed, and they send me home, telling me it's nothing. I had a tension at 14/9, beyond we act, until 14/9 we do nothing!

I stayed for almost a week with this pain that prevented me from living properly: I could not even press the accelerator pedal of the car for example.

I go back to maternity emergencies at 11am, and I do not go out any more. At 22h I'm told: that I'm having a pre-eclampsia, hence the 21/9 of tension, and that I'm also doing a HELLP Syndrome:

my kidneys were not working anymore (I was not urinating anymore), the liver either (I was yellow from head to toe), I was doing trombopenia (platelets had dropped to 15,000) My motherhood can not do anything for me (level 3 anyway and one of the most famous in passing), they transferred me elsewhere, around midnight. 

At 7 am I was an emergency caesarized for maternal rescue. Our daughter, my partner and I decided not to intubate at birth, because she had absolutely no chance, her stunting was extremely severe.

Over time, I learned that my pregnancy had caused the appearance of anti-phospholipid anti body, which I had never had before. This caused multiple micro thromboses of the placenta, which caused him to grow, so the baby could no longer develop. 

Following this, these antibodies are negativés. I was warned: no pregnancy for 1 to 2 years, and there. I fall pregnant 3 months later a contraceptive accident. The doctor who gave me a Cesarisée saw absolutely no incognito in the continuation of this pregnancy. However, more follow-up was put in place, including day hospitals every month, and shock treatment, since the antiphospholipid antibodies are still back during pregnancy!

I still had hypertension 3 weeks before the planned cesarean, but it never went as far as the first time (16/9 maximum).

Pregnancy and lupus: Not so simple!

So my balance sheet:
I do not want to scare anyone, but I'm quite fatalistic in general, not especially because of my health, it's my character. I would say to conclude this article, that even in being in remission, a pregnancy with lupus is not without risks.

Obviously, we are more likely to have a pregnancy that ends, being in remission. But in my case, I was absolutely not in thrust, and yet, the fate was hard. Well, for the moment, I am formally forbidden to fall pregnant in the next 2 to 3 years, especially for my body / health! So caution is needed  

The professor who has césarisé for the two pregnancies, has always been of extreme sympathy. He even came to visit us one morning, at the maternity ward. I would not hesitate a second to follow me again, if future pregnancy there is. 

PS: I did not write this article to scare or pity. Basically, this blog was a crazyness, where I told my life, my daily life with lupus, even if the subject is not very happy, it's not taboo either to the point of not talking about it. I am neither the first nor the last to whom it happened, and if the end of this story can comfort many, I would be more than happy! Image credit by: mymeenalife.com
Interview With Carenity

The Lupus is a chronic disease in which, for some unexplained reason, the immune system defense cells attack the patient's body. The symptoms vary according to the individual and are multiple: fever, tiredness, pains, disturbances of the vision, nephropathy, swelling of the joints, cutaneous plates with crusts.

This week Claudia, a member of the Lupus community, is giving us a hand and telling us about her daily struggle with the disease. She is also the editor of a  blog on Lupus, entitled "Lupus sucks", on which she testifies of her experience.  Here is an interview with me with the Carenity Blog. Good reading!

Your daily life with lupus
Carenity: Hello! Can you introduce yourself in a few words?

Lupus interview: My name is Claudia, I'm 26 years old. In a relationship for 8 years, I am today the happy mother of a 3 months old baby boy. I am currently looking for a job in the field of Communication.

Carenity: When have you been diagnosed with lupus? How did it go?

Lupus interview: I was diagnosed with my Lupus at the age of 9 in 1996. I was young, which was surprising at the time. It was at the Children's Hospital of Lisbon. At that time, there was a lot of talk about Lupus in Portugal: Spots TV, Lupus Association, and even a TV series typified "Emergencies" that dealt with patients with Lupus, often episodes were based on cases of real patients. So when at 9 years old I became aware of my illness, I already knew her a little bit. My mother took me to our doctor, following the appearance of petechiae (small red to purplish skin spot) on my face. neck and ears. Neither my mother nor I suspected that it would be a PTT (thrombotic thrombocytopenic purpura). This purpura dropped my platelet count extremely low, and soon after I was diagnosed with Lupus. (Besides, the doctor who diagnosed me at the time, was herself lupus!).

Carenity: How does your illness affect your daily life (social life, work, personality)?

Lupus interview: Tiredness and the pains, for my part, continuously are extremely disabling for two reasons: - Even when I'm not in Lupus, I feel constantly deprived of all my energy. It is difficult to get up in the morning, to prepare, to go out, to go to work, to walk, etc. Difficult to have a normal life in these conditions. Whether I sleep 3h or 15h at night, the result will be the same on my physical state. - Fatigue and pain are not seen, but are felt. So I'm not very credible to people in general, when I refuse an outing or an activity, or that arrived in the middle of the day, I'm already flat, etc. People have a hard time believing in something they do not see, and tend to downplay (according to my experience) the feelings of the sick.At the level of family life / friends, I am often confronted with an "oblivion" of my health problems, or misunderstanding. And at the work level, for me, it's very hard to follow physically. I would move in the future towards a post with arranged schedules.

Carenity: What are your priorities / goals right now?

Lupus interview: For now, one of my priorities is my son. My pregnancy was very hard with the disease, very monitored, stressful, etc. Now that all this is over, and my little boy is here, I intend to spend a lot of time with him! But I'm also thinking of returning to a professional activity, towards the end of the year!

Carenity: What makes you happy in life?

Lupus interview: Feel good, fit, just be happy! I like going out in general, and I love especially the summer and the beaches! The sun is not my "enemy" , unlike the majority of patients with lupus, so with the agreement of my doctor, I take advantage of this summer period.I like cars, motor sports in general! I also like animals: dogs, ducks, turtles: I love them all haha! But I only have a little poodle called Liquorice! 

> Your blog and your vision of the patient 2.0

Carenity: Why did you create your blog "Lupus sucks"? To whom it is addressed ?

Lupus interview: One day I fell on the blog of a lupus, and I began to read (The dialysis and Lupus of Mary, in my links). She seemed happy, and seemed to be able to combine sickness / everyday life. I contacted her, talked to her and she advised me to create a blog to "empty my bag". But very quickly, I realized that many people newly diagnosed for the vast majority, with very different attacks, read me, and wrote to me. From a crazyness, my blog is then passed to information, or support to other patients. Today my blog is intended especially for lupus and their relatives, who seek to better understand, by the remarks that I make about my experience. I receive a lot of messages from relatives. Some,

Carenity: What is your vision of the patient "actor of his health" and the evolution of his relationship with the doctor?

Lupus interview: I am lucky to be followed by a very good hematologist who understands me and listens to me. He makes every effort to improve my health, and always explains things to me without taboos. In addition, he is nice, smiling, and that, it is also pleasure! Being an actor of his health, it is above all to be aware of his health, and to make every effort to keep himself in good health. It is not feeling submissive, crushed by illness, but on the contrary to appropriate his health, establish a dialogue and make decisions with his doctor. It's getting involved in your illness, at least finding strength and courage to improve your daily life.

> You and Carenity

Carenity: What made you join the Lupus Community on Carenity?

Lupus interview: I knew Carenity only by name, and it was after a contact with a Carenity interlocutor that I started. I did not think there would be so many lupus patients! So initially, it was curiosity, seeing how it was done, etc. In the end, I find the concept well thought out!

Carenity: What makes you want to come back to Carenity?

Lupus interview: The forum is a real place of exchange and sharing. We can all help each other by sharing their experience with each other, despite our attacks, which are often very diverse and varied. When I was younger, I would have liked to meet people suffering from the same pathology to exchange. Today, it seems logical to share my experience, and if he can reassure, inform, or simply answer the questions that patients ask, I am delighted!

Carenity: The final word ?

Lupus interview: I thank Carenity for giving me the opportunity to write these lines. Thank you also for this site that allows us to feel less alone, less misunderstood, and to meet people in the same situation as us. 

Thank you very much Claudia for this beautiful testimony! He brings a lot of support and hope to this chronic Lupus disease. If you also want to exchange, reassure or simply find information on Lupus, do not hesitate to join the Lupus community on Carenity.