Hmm…take these statements for instance.
“I have diabetes.”
“I am a cancer survivor.”
The first sentence is just three words. The second sentence is just five words, right? But it’s not hard to see that an entire novel could be written by each and every individual who can make such a statement.
“I have dermatomyocitis.”
So *actually* this is the short version…
“Oh wait I’m not even sure if the results of your muscle biopsy are in. Let me go see (some time passes, I don’t even make eye contact with my dad, I just kind of fiddle with my phone.) Yeah you have dermatomyocitis.” Hmm…I suppose this is a rather routine diagnoses for a rheumatologist. I wasn’t asked how I was feeling. I wasn’t asked much of anything.
I feel as though the doctor has already disconnected from the situation and from me. We had a fantastic repore my first visit. “You’re too young to be in this office. What are you doing here?!” He jokes. I respond, “I know! What’s up with this?” I laugh. We connect, a young guy himself. We began to disconnect when I insisted that my diet was making a difference in how I was feeling. “Davea, what you are eating is not affecting your immune system. Let me test your strength. You are still strong. I have patients sitting in my office who can’t even move their arms and legs.” Lets fast forward back to the response of me receiving my diagnoses,“I figured.”
This doctor, he’s a really nice guy. I then made him explain to me the anatomy behind the immune system.
At this point I honestly wasn’t surprised, I was more surprised my previous visit when he mentioned that I could possibly have dermatomyocitis, I had already obsessively researched it, matched up the peculiar nodules on my fingers with the pictures online, I was mostly mentally prepared for this diagnoses. I had already had my big break down, it was directly after my muscle biopsy surgery. My poor father had to witness it. It was basically a lot of sobbing. A lot of the world spinning. A flooding of memories, hopes and of dreams that I would never get the opportunity to achieve. A lot of anger, “This world’s not fair and even if I somehow got better there would still be others suffering. There’s always someone suffering. This world isn’t fair, if it’s not me, it’s someone else. I have never been and I will never be satisfied with this world.”
This is a true statement. I still feel this way, I’ve always felt this way. Even as an elementary school kid. But I can cope with it. I’ve accepted it. I’m happy, but not happy with the unfairness. Nonetheless I still remain a relatively cheery person. I had read Michael J. Fox’s biography as an emotional comfort when all of this began. He states, “Pediatric cancer patients. They have to learn the meaning of no at a young age.” So yeah, I was prepared for the worst, and when you’re prepared for the worst you’re always prepared for the better.
“The routine drugs for this diagnoses are methlotrexate (a chemo drug), and because this drug is teratogenic (can cross the plancenta) you will have to be put on birth control. Also corticosteroids (these drugs potentially have some pretty severe side effects). Also cancer is often associated with this diagnoses, we will have to do cancer screening on you.” I state, “I want to try out this gluten free diet and I want to be tested for allergies. I am going to wait on the drugs.” He just stares at me silently. I ask, “Have you ever had a patient do this before?” He flatly says, “No.” Our conversation was over and so were our routine visits. He would not send me to an allergy specialist. He wouldn’t send me to a GI specialist either.
After researching my new doctor I needed to get all of my old labs and patient visits printed off to bring to him, I read the patient notes from my rheumatologist. I read all of them from my first visit to my last visit. I am paraphrasing here, but it went something like, “This patient is a pleasure. Thank you for the opportunity to work with her.” He even put, “Patients states to be finding a gluten free diet effective.” To my last visit, “I spent an extensive period of time in the room with this patient explaining the anatomy behind her illness as requested.” Chapter closed. Next chapter. New doctor. Nice guy. Good lookin guy. haha. But he wouldn’t work with me. I wanted to search for a cure, not a temporary band-aid.
I feel as though the doctor has already disconnected from the situation and from me. We had a fantastic repore my first visit. “You’re too young to be in this office. What are you doing here?!” He jokes. I respond, “I know! What’s up with this?” I laugh. We connect, a young guy himself. We began to disconnect when I insisted that my diet was making a difference in how I was feeling. “Davea, what you are eating is not affecting your immune system. Let me test your strength. You are still strong. I have patients sitting in my office who can’t even move their arms and legs.” Lets fast forward back to the response of me receiving my diagnoses,“I figured.”
This doctor, he’s a really nice guy. I then made him explain to me the anatomy behind the immune system.
At this point I honestly wasn’t surprised, I was more surprised my previous visit when he mentioned that I could possibly have dermatomyocitis, I had already obsessively researched it, matched up the peculiar nodules on my fingers with the pictures online, I was mostly mentally prepared for this diagnoses. I had already had my big break down, it was directly after my muscle biopsy surgery. My poor father had to witness it. It was basically a lot of sobbing. A lot of the world spinning. A flooding of memories, hopes and of dreams that I would never get the opportunity to achieve. A lot of anger, “This world’s not fair and even if I somehow got better there would still be others suffering. There’s always someone suffering. This world isn’t fair, if it’s not me, it’s someone else. I have never been and I will never be satisfied with this world.”
This is a true statement. I still feel this way, I’ve always felt this way. Even as an elementary school kid. But I can cope with it. I’ve accepted it. I’m happy, but not happy with the unfairness. Nonetheless I still remain a relatively cheery person. I had read Michael J. Fox’s biography as an emotional comfort when all of this began. He states, “Pediatric cancer patients. They have to learn the meaning of no at a young age.” So yeah, I was prepared for the worst, and when you’re prepared for the worst you’re always prepared for the better.
“The routine drugs for this diagnoses are methlotrexate (a chemo drug), and because this drug is teratogenic (can cross the plancenta) you will have to be put on birth control. Also corticosteroids (these drugs potentially have some pretty severe side effects). Also cancer is often associated with this diagnoses, we will have to do cancer screening on you.” I state, “I want to try out this gluten free diet and I want to be tested for allergies. I am going to wait on the drugs.” He just stares at me silently. I ask, “Have you ever had a patient do this before?” He flatly says, “No.” Our conversation was over and so were our routine visits. He would not send me to an allergy specialist. He wouldn’t send me to a GI specialist either.
After researching my new doctor I needed to get all of my old labs and patient visits printed off to bring to him, I read the patient notes from my rheumatologist. I read all of them from my first visit to my last visit. I am paraphrasing here, but it went something like, “This patient is a pleasure. Thank you for the opportunity to work with her.” He even put, “Patients states to be finding a gluten free diet effective.” To my last visit, “I spent an extensive period of time in the room with this patient explaining the anatomy behind her illness as requested.” Chapter closed. Next chapter. New doctor. Nice guy. Good lookin guy. haha. But he wouldn’t work with me. I wanted to search for a cure, not a temporary band-aid.
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