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.
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