SECOND INTERVIEW
A: Describe your condition in more details? Tell me how your symptoms were in the beginning of your medical condition up to now?
MC: In the beginning I felt well. I didn't have problems, didn't bleed, didn't need blood transfusions, didn't have shortness of breath.I didn't feel on my bones.
(SILENCE)
I had a normal life like any other person. I worked....
A: How many hours did you work?
MC: I worked for 30 years, I did my home life entirely. I would cook for the family, clean. Little by little I became tired, I would become tired more. I didn't have any strength to leave the house, to get out and take a ride with the family. I had pain in my bones.
(A interrupts)
A: How long ago did this happen to you?
MC: It was, (pauses), two years ago, wait no, it was from 2011 into 2012. In 2011, I was feeling tired, with pain. I didn't want to leave the house. I remember that we were close to Christmas time and I was with the family at the mall, buying gifts and I felt horrible. I remember that I had to sit on the floor because the pain was so much, so painful on my bones that I even cried. And from there. (Pauses)
A: So, describe to me how the pain was like?
MC:A pain can't be described correctly. It's very painful and unbearable. It's in the bones, joints, it was like someone breaking all of your bones, every single one.
A: Ahh..okay
A: and then, when..continue
MC: Then I went to the doctor, to find out why I felt so tired and sick. It was the tiredness that the doctor found out that I was anemic and that I have Lupus. And it was then that I started a treatment, that took?
A: What type of treatment?/
MC: The name of the medicine I don't remember?
A: What medication?
MC: Ahhh...it was so long ago. I took all possible type of medication for various treatments. It was cortisone, pain medication for inflammation, sleeping pills and
A: How was it like when you couldn't sleep?
MC:: It was unbearable because you don't have position, you turn to one side and turn to the other side, the pain doesn't stop. You become nervous, you go to the floor, leave the floor, you go to a chair, you leave the chair and the pain continues. It's always the same, it doesn't change. Nothing, but even so I still went to work until I started a month or two months before the 19th of December 2012. I started with a new treatment that was the Humira injections. There, the first month was amazing for me.
A: Okay, so you're saying that you were happy with the Humira?
MC: Yes
A: Describe to me more of what you mean about being happy with this treatment?
MC: Oh, because I stopped having pains, my blood levels were stable, my hemoglobin wasn't that low and I was in a better state. I was able to live my life freely. I still worked. After the day of December 19, 2012 it was when everything happened.
A: And with this treatment of the Humira, how often did you do this treatment and for how long?
MC: It was once, one injection every two weeks for two months. But on the second month, half way through, I began feeling tired. I would become really tired especially after going up a flight of stairs, whatever little thing I would do, I felt tired. So I went to the doctor and the doctor said I can no longer take the injections because it wasn't helping it was only harming me. And from there on, I kept going to the hospital, receiving blood transfusions...
A: Speaking about transfusions, could you explain to me how you feel every time you get iron and blood transfusions?
MC: When I get iron and blood, the first and second day I feel my immune system down, but little by little as days go by I begin to feel more strength. I am able to do more things around the house. And my state of being is different. Just walking is the hardest thing for me because my bones hurt me a lot still. I do have medication for pain (inflammation), but it hardly helps me.
A: And what happened to the Humira, why did the doctor stop it?
MC: It was when with the injection, I began feeling tired and at the same time the doctor told me that I wouldn't be able to take it anymore because my white blood cells dropped a lot and the platelets were very low. And from that we needed to stop the injections because it wasn't helping me.
A: Speaking about your physician, tell me more of when you and your physician didn't see things eye to eye when it came to your condition?
MC: When I don't agree with the doctor, neither is the doctor in agreement with my opinion, which in reality I don't know anything about medicine, but I feel my body and system, whats wrong. And sometimes he says its mentally and I say it's not and he says that I have to take medication to sleep and I hate sleeping pills.
A: How come?
MC: I don't like it, I never did. I feel sick with sleeping pills or relaxers. Just the state of being apathetic and not have a sense of anything. The silence is horrible.
A: Explain to me a situation when you and your physician didn't see eye to eye?
MC: It was when I began taking Prednisone that makes your blood sugar levels go high. It was that when my blood sugar levels were becoming high and I didn't want my levels to be high. So I would avoid eating so my levels wouldn't be so high and he didn't want that, he wanted me to eat so he gave me insulin. But I was never satisfied in taking insulin because its been years with just the pills and never did it pass the levels of 130, the max 150, if that. But with Prednisone it started going to the 300 levels and I didn't want to take insulin. The doctor kept insisting that I needed to take it to help my blood sugar levels. I took it, he began increasing the insulin dosage, more and more until I started feeling sick. That was when I told my physician that I can't handle this much of insulin, I feel sick. But you have to take it and I would say No because I feel sick.
A: What would you feel when you would take insulin?
MC: Just felt sick. I felt like throwing up, very dizzy, ringing in my ears, it was a combination of symptoms that would put me nervous.
A: And what would your doctor say when you would..
MC: He would say that I am stubborn and I said that he's stubborn because I know what I feel. I know that I have no knowledge about medicine but you don't know everything about my body and the way I would react or not. I began the treatment to a certain point but after that point I can't do it. And at times we have our encounters, because I say one thing and he says another. Because of the blood sugar levels being high it was making me scared of eating, afraid it'll raise. He would say it was all mental that it was me being paranoid. I'm none of that, absolutely nothing.
A: okay...
MC: Afraid yes, I was afraid of eating, that part yes. I was afraid because of my diabetes. Now a days when I do endoscopy's is when I feel nauseous and I don't want to eat but that is normal. But there was a time that I wanted to stop eating because of my diabetes. And he would say I'm stubborn that I need to eat. I know I need to eat but at the same time I was afraid of my diabetes.
A: Tell me more about your family's involvement with your treatment:?
MC: My family has been a great support for me. Some times I don't recognize it because of being desperate, for wanting to be healthy, for not wanting to give a hard time to anyone. But the person that has helped me more, more, more and has supported me in everything is my daughter. She is the one that takes me to the doctors, she knows the medications that I take, when I go to the hospital she has everything written down. She is cautious in everything, talks to the nurses, questions the doctors about my condition. She has been a great support to me. At times I know that I say things that I shouldn't say, but she knows that it's just nonsense.
A: Could you tell me more about your experience every time you are given a new medication to try for your treatment?
MC: If the doctor says I have to take it, then I take it. But it's the side effects of that medication that I have to see to discuss with the doctor about how I feel, if I feel well, if it's the same thing as not taking anything and with his experience he tried to help me. Certain new situations, I never refused taking it, at times I say I don't want it, it tastes horrible, I have stomach pain or I'm not going to take that crap.
MC: Oops I said a bad word
( A and MC laughs)
A: What does the doctor say when you say you won't take that crap anymore?
MC: Sometimes he tries to give me another medication. Try this one, try that one, but the results it's particaly the same. Pain in the stomach, sick, but he tries to always help me. Some times the medication works and I accept better than the last one or I reject it. It all depends on my body if it accepts it or not. But I always try to tell him that I do or don't do well with it and he helps me. I can't say that he doesn't when it's not true. he has always helped me. At times we become stubborn, but we move forward. But I always take the medication he gives me and I try to explain my reaction whether good or bad.
A: Through your experience with this medical condition, what frustrates you as the patient and physician the most about your condition?
MC: The frustrating part is that we've tried everything such as pills, relaxers, injections and nothing. It helps, what two, three days and it goes back to the beginning. Just like me and my physician, we become frustrated because we try and there's no improvement with me. While other patients, that are there with the same condition, but without having other problems internally, are doing the same treatment as I am, and it improves for them. And how come it doesn't in me?
So I ask him the question: Why doesn't it work for me?
A: And what does he say?
MC: He says that it all depends on the body of the person. And your body doesn't accept certain things because whether taking it or not, it's the same thing, it won't help you in nothing and it could be that I've already tried it. Like the very first medications after one or two years, I return to taking the same medications and the condition was exactly the same. In the beginning it was fine, when I reach the middle, my body rejects it and I become frustrated. The doctor never showed me his frustration, he has always helped me with what he can. Unfortunately my body sometimes accepts the treatment and at times it rejects it. What are we going to do?
A:Okay, explain to me one more time what is your medical condition?
MC: Starting with the immune system not working well, becoming autoimmune. Everything becomes low. The worst is I begin to bleed and I have malformations on the veins in my stomach. The most difficult part becomes when I begin to bleed, everything due to Lupus. It attacks the stomach and every time it attacks, the veins burst and I begin losing blood. At times it'll take awhile like one to two months and suddenly the hemoglobin goes down. Everything goes down, my WBC's, RBC's, platelets, potassium and hemoglobin. I can't pills, capsules because it affect my stomach. Everything has to be injected. All of this makes it difficult for me. I have to tolerate more taking the potassium, it's no joke. If it's intravenously, it burns so much. It it's solutions, it tastes disgusting. I have never had anything that can taste worse than potassium.
A: How would you describe the way your physician cares for you ?
MC: He's the best doctor I have so far. He worries about me, how I'm doing and check all levels. He helps me in all he can. I wouldn't trade him. Just the patience and strength he has for me to figure out something that can help me since he can't cure me. he helps ,e to feel in a different state of being. But it's not his hands and I know that. He listens to me, helps me through all of this. It's hard to find someone like him.
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