I have time like I may never have again. To write my book.
Everything can be taken away from you. I used to pride myself that I wasn't an athlete, I wasn't a dancer, I wasn't a singer, my body could be mangled in an accident, and I would still have my mind. That is what I invested in. Reading, knowledge, writing. Yes I loved art, and music and I was afraid that one day they would take my eyes away or I would lose feeling in my hands. Near perfect SAT scores, finished high school at 15, and when I was finally allowed to pass the exam right after my 17th birthday, I aced it, all these things I was so proud of. I got fevers instead.
I have been through hell and back and all without a therapist.
I'm not advising it, I'm not recommending it. I'm just stating that I survived because I want there to be a record that I did. I will go through life pretending to be normal because that is what success means. Happiness, pleasure, a life, understood, aspired to lived. And yet what went on behind the scenes has to come out somehow.
I want to be a doctor somehow. Or a therapist. I feel like I have so much I want to give to the world, to avoid the pain, or learn through it.
My accomplishments:
I finished high school when I was 16, the 12th grade in 5 months. This was including I took a year hiatus when I was 15, when I left home. I was speaking french within 6 months of moving to a francophone country, started my own business when I was 17, sold my first painting when I was 17, had my first painting exhibit when I was 18.
Then I got sick, and my life went on static for 2 years. However I still managed to move to France, improve my french, get into Parsons Paris, and EEGP, go to an art school for a year, try the famous french concours, pass the first 2 epreuves of Les Arts Decoratifs, missing entry to the next exam by 0.75 of a point.
now what? I want an associates degree. and then I want a BA. I want a masters. I want to dress well, speak well, be educated. I know I could study something like business or law if I wanted to.
There are no limits. I could be a doctor, but I hate hospitals. I could study psychology. Right now, I want to study design. Maybe I'll want to study painting restauration, and make classy forgeries. I always was good at stealing. Little things. And I never got caught. Except once by my mom, probably my first theft of my friend's toy.
But to be a photographer...how classy would that be. I am talented in just about everything to do with art. Except, umhum, what I want to study. Shit. I am so scared that I am bad at graphic design. But I'm really good at drawing, copying, I could do book illustrations for children. I want to learn the old world techniques of painting. I love literature.
Avicennes: Thanks to Mai who got me hospitalized in Avicennes, someone is finally taking my sickness seriously and running every test imaginable to find out what I have. In the meantime, Mom discovered on line that I fit all the symptoms for rickettsia africae, caused by a tick bite (remember that weird bug that bit me 2 years ago in Congo and left these ugly purple scars on my feet?) But the docs here are not convinced.
22-7-11 Everything is fine, well I don't have a fever, not since that last big thing before i went to the hospital, I'm just really tired still and sleeping alot, and I'm going to go to my next appointment with the doctor on the 27th of July.
I wanted to ask my mom for the information on the tick test. I was thinking of asking the doctor at the centre medical i went to before to prescribe the test, so I can see if it could be that.
Zahid called me this morning, very sweet of him.
23-7-11 mom: I think you need to fight like crazy to get that test done, and even if it shows negative (cause it's so hard to detect), to ask the doctors to give you the medication for it to see if it works. Tell them that if that's what it is and it goes on being untreated, it could kill you, and you've had enough, almost 2 years now of being sick. Taking this medication will not kill you though. Say you've cooperated enough, you've given them enough time to investigate, you've taken enough tests, now it's time to try out medication. Both this one for ticks, and if that doesn't work, repeat the one Dr. Lewis gave you, which at least kept you healthy for a good 6 months. And if you're too weak and sick to fight with them, I'm gonna ask Stephy to come with you or I'm going to come myself.
me: I know, enough is enough, I am going to cry or I don't know what, but I can't just keep being sick. I need to work, I am on my own, its just not possible they don't cure me.
30.07.11 i'm doing better,
i went swimming today
i'm still pretty tired, but better
which reminds me i need to take my meds now
have another appointment with the doc at the end of august, right before i leave
so it had better work
i asked for a letter detailing my history and the tests they did for when i go to a hospital in angers
in case i have to be suivi by somebody there
the specialist said its rien de grave
si c'etait quelle que chose de grave, comme un cancer
ils auraient du trouver avec tous les examens qu'ils ont fait
alors c'est rien de grave
i hope i keep getting better
i feel like i've done nothing but sleep and eat the whole month of july
the plan is not going to work if i don't have my health
i am also intending to work in angers, if i register as self-employed, i could legally do kids parties
Ma correspondance avec la spécialiste qui a suivi Natalie à Avicennes, après que j'ai découvert sur internet de quelle maladie elle souffrait depuis 2 ans:
ReplyDelete6-7-11 Cher Docteur,
Ma fille Natalie Volpe est hospitalisée pour observation dans votre service depuis ce lundi 4 juillet. Je viens de me souvenir qu'elle s'était fait piquée par une "bestiole" pendant son séjour en RDCongo qui a laissé des cicatrices ou escarres sur ses pieds, qui ressemblent fortement à celles laissées par le tique Borrelia spirochete ou Amblyomma qui donnent la maladie Rickettsia africae qui peut provoquer des fièvres qui reviennent pendant des années. Serait-il possible de rechercher cette possibilité? C'est différent de la maladie de Lyme et les symptômes sont aussi différents.
J'espère que cette information vous sera utile. N'hésitez pas à me contacter pour tout autre renseignement qui pourrait vous assister dans votre recherche. Vous pouvez me joindre par mél à clotilde@africawork.net ou par téléphone au +243 816293156 ou par skype ou yahoo messenger à clotilde_164.
Je vous remercie vivement pour votre expertise et pour tout ce que vous faites pour soigner ma fille, je vous en suis infiniment reconnaissante.
Bien sincèrement,
Clotilde Volpe
8-7-11 Bonjour
Nous avons cherché une rickettsie. Pour le moment le bilan dans ce sens est négatif.
Bien cordialement
Sophie Abgrall
Cher Docteur,
Merci d'avoir pris la peine de me répondre. Serait-il possible que les résultats soient négatifs quand le test est pris hors période fébrile? Si Natalie refait de la fièvre, peut-on refaire le test à ce moment-là?
Est-il aussi possible que ce soit quelque chose de très difficile à déceler, et qu'un résultat négatif ne signifie pas automatiquement que la maladie ne soit pas présente?
Envisageriez-vous de lui administrer un traitement de Doxycycline (Vibramycin, 100 mg, 2 x jour pendant 7 à 10 jours) ou de tetracycline (500 mg, 4 x jour pendant 7 à 10 jours) ?
Natalie souffre depuis presque 2 ans maintenant, et même lorsque qu'elle n'a pas de fièvre, elle est très faible et a des étourdissements. Peut-on considérer lui donner un traitement à l'essai? Elle est inscrite dans une école de graphisme à Angers et doit être rétablie d'ici septembre.
Je suis confiante que vous faites tout votre possible pour bien la soigner et je vous en suis très reconnaissante.