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Afraid= worried or anxious about something…

One of the moment that can frightens a kid , generally babies and kids until their 7 is when they are afraid of needles (some adults are still afraid too! ) One tip is to you spread some anaestesic ointment in the place where you are going to receive the needle minutes before.

Don’t be too afraid of needles, you need to learn how to do your replacement factor therapy as soon as you can…it is much easier after that. You can be independant!!

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Auto-infusão:

Tão importante ! agora saiba que no nosso centro de hemofilia , a enfermeira Eliane e sua equipe formam crianças desde a idade de 5 anos para se auto-infundir o fator! esta é a Eliane

Querida Mônica,

Primeiramente gostaría de te parabenizar pelo teu interês específico na hemofilia para poder atender adequadamente e eficazmente o desenvolvimento do seu aluno Higor.

Com certeza a atividade física é muito importante.

Terás lido no Hemoação que estimular os músculos, ajuda a fortalecer as articulações, e portanto ter menos sangramentos.

Más temos que ADEQUAR os excercícios considerando estos pontos:

1. cada hemofílico terá a sua própria hemofilia: quero dizer com isso que se ele tem hemofilia grave com sequelas articulares é um caso, pode ser hemofílico moderado e sangrar pela primeira vez durante um jogo, enfim são muitos os casos que terão que ser considerados em particular.

2. qual é o caso de Higor? você tem que começar a conhecer seu rendimento, seu potencial, seu grau de flexibilidade, se ele exagera ou não quando começa um jogo, se ele alonga direitinho…

tudo que se recomenda para um atleta (aquecimento, alongamento, excercícios e alongamento) tem de ser comprido a risca!

3. Se ele está se recuperando de um sangramento num dos joelhos, pode-se fazser excercícios com os braços…LEMBREMOS QUE o esporte tem um lado de inclusão grupal muito importante para o desenvolvimento psico-afetivo do jovem.

4. esportes de contato corporal direto não são recomendável. Então tem que ser criativo como professor para fazer ele perceber a sua precaução e ao mesmo tempo jogar de uma maneira segura.

ou sendo juiz, ou batendo a bola de lado corretamente.

5. Excercícios fisioterápicos são imprescindíveis na vida de um paciente com hemofilia.

6. E, quando a criança ou o jovem não está “paciente” porque não está com sangramento, temos que propor para ele um esquema de preparação física adequado para fortalecer seus músculos!

boa sorte e fiquemos em contato

frederica

I WOULD LIKE TO BE PART OF THAT!! ADORARIA FAZER ESTA GUERRA DOS TOMATES !

Guerra dos tomates maduros em Bunol-Valença em Espanha. Que melecagem..deve ser divertido.tomatina-001.jpg

TOMATOES WAR in Bunol-Valencia, Spain. It looks like a battle field..only that this one looks really funny!

One day he will fly away from the nest and will come back to enjoy your embrace…

Um dia o filho voará  para longe do ninho  e voltará para desfrutar  seus abraços  de pais…

Un beau jour il s’en ira, pour retourner  dans vos bras avec pleines de belles histoires et aventures.

Quality of life….I am in contact with the hemophilia community for more than 15 years and if I am not wrong the concept of quality of life is new for PWH and their families.

I like the term but I don’t agree about how it is used. Let me explain to you my point of view: it seems that the priority is to have Factor for everybody and as prophylaxis. It would be marvellous I totally agree. It would prevent so much hemarthrosis and would make some severe hemophiliacs becoming moderate or mild…almost asymptomatics….(without symptoms of hemorrhages ) but what I SEE , what I have to live with in day basis is another reality.

It is the DAY TO DAY reality of a patient who has to DO A LOT WITH FEW ressources. Material ressources such as home therapy, or prophylaxis aren’t a reality for most countries in the world. I agree too that efforts must continue to reach that dream.

But as the title says I am a server of the psyche, a psychotherapist, and as one I am used to work with what I receive and stick to that to transform things. These “things”are the  inner aspects of personality,     that claim for transformation.

For example, imagine how would you BE with a family who knows that in other countries, Factor is available as prophylaxis ? what feelings arise? envy, rage, anger, lack of motivation….BUT ALSO other feelings and attitudes can arise : let see what my center offers? what is hemophilia FOR ME? what can I do in my way of seeing things and change to improve my quality of life?

Because what I believe is that if we spend time just looking outside of ourselves, and pity our conditions…we lose time and the oportunity to have GOOD IDEAS. Good ideas come when we realize what is missing in our way of doing things, and when we change our mind.

quality of life is a matter of HOW we see things that happen to us:

 We can change our ideas, we can change our mind about the way we use to think of hemophilia, being sick, troubled, in rehabilitation, in love… but OUR BIG EGO don’t like to change its mind!! that usually makes him feel “unstable, incoherent, irresponsible….etc etc” good excuses to blame always the others for what we are, for what is happening to us.

I have seen men and women with hemophilia that depressed, but have seen through their depression and have understand new things, new ways of living. Quality of life is also an attitude where the patient is not always a patient, as he sees that he is more than a person who has hemorrhages…he is a son, a friend, a active member of his surrounding even if he can;t move! he is a person who can make friends, can be helpful as help people sometimes.

Quality of life is not only about material aspects but also about psychological ones. To do psychology is to have a deeper look on events. And in that way events transform themselves into “experiences” .(James Hillman in his book Re-visioning Psychology explains that beautifully)

And  with a Prevention Approach it seems easier right: at the center we work with the little ones and prepare them with early self-infusion, or they learn about hemophilia with flash cards, playing, drawing. They learn how to take care of themselves early.

But I work also with people that are teenagers and adults and I find it easier, because in psychotherapy or counselling, they discover that they can choose if they want to be a victim or not. And believe me, there is happiness and good experiences in their lives.

We are not only the body we receive at  our birth.

Along the years, we can’t deny the feeling of an inner urge, a need to fullfil.It is about discovering ourselves, our potentialities, our bounderies…sometimes it is good to transpass frontiers and to experience the freedom of just BEING.

Avatar means for some religion a manifestation a spiritual one of your self, in the web you can have your “avatar” which is another face, aspect of yourSELF. HOW MANY FACES DO YOU HAVE, HOW MANY FACES OF YOUR WOULD YOU LIKE TO DEVELOP?SHARE?

this movie is great! and deep…

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No filme Avatar o protagonista sonha com cumprir uma missão para poder voltar a caminhar depois de uma cirurgia…um sonho de cura! Seu andar na vida é focado no corpo e ele esquesce sua alma, sua necessidade de compaixão, de significados mais animadores. Conhecete-a ti mesmo é a chave do bem estar…fisico e moral, singular e global.

QUANTAS CARAS, quantos “avatares” podem te representar? o quanto você ainda tem que se REVELAR?

ESSA é a verdadeira viagem do filme! vale a pena CONFERIR

The children in BLUE represent the blood full of dioxyde carbon and then they switch they t-shirts in RED representing the Oxygen coming from the lungs! beautiful explanation!

AS CRIANÇAS EM AZUL REPRESENTAM O SANGUE QUE ESTA CARREGADO DE DIOXIDO DE CARBONO
(EXPIRANDO …BOTANDO O AR PARA FORA PELOS PULMÕES) E DEPOIS ELAS TROCAM PARA A CAMISETA VERMELHA SIMBOLIZANDO O SANGUE CHEIO DE OXIGÊNIO (INSPIRANDO) QUE SERá distribuido pelas artérias no corpo todo.
linda iniciativa!!!

playing and learning about hemophilia!! at this age of 5 and 6, I have to repeat a LOT and PLAY MUCH MORE

Forever pure, forever sincere, forever learning to be yourself…between shadows and lights, fire on earth, winds on  waters

Para sempre puros, para sempre sinceros … procurando ser nós mesmos…sombras e luzes, fogo sobre terra, ventos nas águas..

Red hearts from Koen Theys, 1999

My MOM  HAS EMPHYSEMA SINCE 2004…SHE DEPENDS ON OXYGEN AND ON HER EMOTIONS TO COPE WITH HER CHRONIC HEALTH SITUATION. I ADMIRE HER BECAUSE SHE DOES HER  FISIOTHERAPY, HER BREATHING EXCERCICES, SHE TAKES HER MEDECINE…SHE WANTS TO BE AS AUTONOMOUS AS SHE CAN. HEMOPHILIA AS A CHRONIC  BLOOD CLOTTING DISORDER THAT REQUIRES TOO DISCIPLINE AND JOY OF LIVING TO COPE BETTER! I HAVE LEARNT  this WITH ALL MY FRIENDS OF HEMOPHILIA AND WITH WHOM HAVE THE DISORDER.

Each time I have to make some blood tests or receive a shot…i must confess that I have a flashback of my childhood where they used to grab me and force me after catching me running! sorry…maybe that;s whay I like to PREVENT and explain everything so carefully, with details with kids> I like showing them the stuff we use at the center, describe the sensations….

and it worked well for the children with hemophilia, with mine and with me!

I really believe that when people try (sometimes with the best intentions) to hide informations, or try to trick a child to face something not pleasant…it is worse!

I am talking about prevention even with babies!! babies can’t understand flashcards but they understand the voice and how it sounds. The confort, the compassion, sharing your baby’s fear and telling him that soon it will be over.

I remember reading years ago Kelly ’s wonderful book “raising a child with hemophilia” and belief that no baby should receive more than few trys to find the vein…it is better to stop and start later or with another nurse.

WE WANT AS CARE AGENTS THAT OUR BOYS LEARN AS FAST AS POSSIBLE TO INFUSE FACTOR OR TO SEEK FOR THE PROPER TREATMENT AT TIME. That is why we have to work with this kind of preventive attitudes from the first step at our center.

bye my webfriends!

At the center of hemophilia, inhibitors is another aspect of having hemophilia. Remember what I wrote in my monograph “psychosocial care for people with hemophilia….”?  As care givers and parents we will discover HOW each son develops his hemophilia. Well, it is about how to cope with so many details and facts that arouse through the process of living .

Just to explain in a simple way: if an hemophiliac has “inhibitors” it means that his blood doesn’t clot with the regular factor 8 or 9 replacement.

THIS was a schocking fact for all the families with babies that first had difficulty in venous access and years ago with no other solution but give huge amount of plasma, or factor 8 or 9. GABRIEL IS 14 , AND USED WHEN BABY 3 YEARS A CATHETHER  UNDER THE CHEST’s SKIN (port-a -cath) WITH SUCCESS!

Nowadays, we have specific fator replacement and we can put a catheter to relief the tiny and fragile veins of our babies.

The emotional aspect of it is ….acceptance and an pro active one! I can accept i have something not functioning in my body r my mind (which are so much connected and mixtured) and after acceptance quit or face it gently and with courage. check out impressive stories at  www.mybloodbrothers.com and at  Laurie Kelly  website.