Blog 21

This is my first interview with my subject, not edited. This first interview has been translated from Portuguese into English.


A:  I'm going to ask you various questions regarding your medical condition. Is that okay?

MC: Okay

A: How are you doing and feeling today?

MC: Good, I'm not. I still feel pain, nausea. I have pain on my left side.

A: Okay, ahhh,, How long have you been under treatment with your caring physician?

MC: A year

A: In your words how would you describe your case in regards to your medical condition?

MC: Can I say a bad word?

A: No you can't, this is an interview.

MC: Laughs

A: Come on! (laughing)

MC: Ahhh, it's a critical medical condition because majority of the time I'm afraid to bleed, end up in the hospital, get blood transfusions. I need to do the treatment I need to do like go for Endoscopy's, cauterize. All of this. I can't live normally. I don't have quality of life.

A: Now that you mentioned that, Tell me about your experience every time you are required to go to the hospital and how it effects you every time?

MC: Every time I end up going to the hospital, it effects me morally, physically and mentally because it's not one or two times, it's various times that I undergo the same procedure and every time I tolerate it less each time.

A: Okay, How has your doctor described to you what your case is in regards to your condition as well as if he had or had any case's that is similar to yours?

MC: He has similar cases like mine, but they can take other medications that I can't take because my body rejects and the other patients have a life, a quality of life better than mine. Because I have Lupus. If I don't have the problem of always going to the hospital, receive blood, have transfusion, ahhh, my bones hurt, I have poor quality of life.

A: Tell me a story when you were happy with the treatment, your physician prescribed to you?

MC: In the beginning when I first began taking the injection, ahhhhh, what's the name?

A: Humira

MC: Humira, I was, I thought that I got to the moment of bettering my condition, but unfortunately it only lasted about one or two months and then it went back to the beginning.

A: Hmmm... Tell me a story when you weren't happy with the treatment your physician prescribed to you?

MC: Someone with the life condition that I have is never happy because I live always being worried, if it's today I'll bleed or is it tomorrow the hemoglobin is low. If it's low, everything turns to be the same. Its's transfusions, hospitals. It's a life that I have no quality at all, I can't do certain things that other people can do. I can't work, I  have to do things much slower, yet I bleed. Many things I no longer can do, it's difficult.

A: Okay, can you tell me a story, when you as a patient did not comply to the doctor's requirement for your treatment?

MC: No, I haven't failed with any treatment given by my doctor. Just the Prednisone, I never liked that medication. I tried to take it, I'm not saying daily, but there were weeks that I would take it the full week, but there were other weeks that it wouldn't settle right with me.

(Silence)

A: While under treatment, have you ever disagreed with his regimen? If so, describe the reaction of the physician as well as yours?

MC: Its not the disagreement I would say. It's the anger that I feel inside. I do the treatment that my physician gives and it doesn't resolve my life, it's not one of my failure. It's the anger that I have inside of me. Al of the trying, the medications, force myself and all of a sudden it goes back to zero.

A: Can you describe your doctor's reaction?

MC: My doctor has patience with me, sometimes he says that I put things in my head that I shouldn't put things in my head, but only who is a patient with the condition I have understands. I can't go against him because he's my doctor, he has taken care of me until now and never turned his back to me, he always supported me. Sometimes I complain with him, sometimes he complains with me. But we keep going.

A: Hmmm... How has your medical condition effect you and your family, in terms of following with what the physician recommended?

MC: Only when I do the Endoscopy, everyone wants me to automatically drink the famous solution, it's the solution that protects the stomach, but on the first and second day, I just can't  put that solution in my mouth. Just by that there's disagreements, one says drink it, another says drink and another on says drink it, but I can't. I have to scream and say, "stop it, let me, my head alone."

A: Hmmm... tell me about when the physician speaks to you about your condition and his concerns to you about your medical problem, opposed to how the physician speaks to your family regarding your medical condition?

MC: He first explains everything to me that he will explain to the family. Then he knows that from the very first day I've been with him that my family always supported me and has always gone with me. So he thinks that he can speak with the family just like he speaks to me in explaining my medical condition to my family.

A: But do you think or see a difference the way he talks to you and your family?

MC: No, maybe he's more cautious on the things he says, more caring, but the rest, in truth what he says to me, he says to the family. No more, no less.

A: How has your medical condition effected you as a person?

MC: OH! A lot! It effected a lot, a lot, a lot. I'm not the same, there are days I am desperate

(Begins to cry)

(A makes her laugh)

MC: What did I say?

A: You feel desperate, not the same, feel sad, very nervous

MC: (Sobbing) Yeah!

A: Okay, through this experience with this medical condition what was the one thing or more that has helped you through your condition?

MC: Up to now, nothing

A: Not even family?

MC: No because it turns out to be the same as always. I have support and when I think that things are good, turns around and goes back to the beginning. Only one that supports me is you, you who helps me survive.