On Monday, I managed to get head CT scan done. And I brought the huge sealed envelope to doctor’s appointment on Thursday. When I got there, the receptionist told me that doctor was running very late and hadn’t arrived at the Medical Centre yet. Good thing is that she automatically asks me if I needed to lie down and let me go to the room. It is always great because not only it is precaution for my OI (orthostatic intolerance), but also it gives me chance to recover from exhaustion of getting there before I see the doctor. She and I now share good rapport and it makes things much easier for me. Unlike my impression about her on the day I first sat at the waiting room alone and had near fatal (?) OI and asthma attack, she is a very hard working, compassionate and efficient receptionist. I am amazed and respect for her patience and things she does without complains, such as taking angry complaints about appointment time, clean patients’ mess made by violent gastro attack in and outside of the Medical Centre, chat with senior patients, and etc…
Since there was a waiting room full of patients and he was behind his schedule, I expected him to be bit tense. However, when I saw him, he was calm and friendly as usual and didn’t show any sign of him being under pressure. Before he opened the sealed envelope, he told me that he’d already seen the image sent by email. He pulled films out anyway and told me that I had brain. Yay!!!
There was no abnormality as I expected. However, he expressed that I need to have MRI done next time. If he sent me for MRI, I have to pay $300. So he wrote a letter to neurologist. If the neurologist sent me for MRI, fee is covered by Medicare. I felt bit guilty and explained my feelings that I feel ME is causing left side parathesia and anything with ME wouldn’t show up on tests.
I was not against his decision. But he was trying to explain his opinion by using some examples. He started the explanation like this, “Sometimes, I get so frustrated when patients try to figure out causes. I know I shouldn’t tell you this… But nobody can figure out causes. You can’t. And I can’t. It’s just an impossible task for us. There are people who do the job, and they are being paid to do the job.” Patients google and constantly think about cause of their illness, but they should be using their time and brain for something else rather than trying to do impossible.
I explained I google to educate myself because nobody before him helped me, and I had to learn about illness from internet and online friends. He quickly said that it was different and he wasn’t talking about me. *phew*
Then he kept explaining despite there were still lots of people waiting. There are things that CT scan wouldn’t show, but MRI might. The symptoms I experience (I cannot know why and only intermittent) are coming from inside, which means brain. On the other hand, ME is outside, meaning muscles. So, they cannot be related. (I better mention that ME is not that simple. It is not just muscle. It affects every part of body and function, including brain. I better mention it just in case someone misunderstand the truth about ME. I decided not to argue with him unless it is really necessary.) While he was explaining these to me, I realised that he was going to make sure the reason for symptoms as sure as possible. It should have been a job for my previous GPs or Rheumatologist. I realised again that he was treating me as a human being who has the right to access all medical tests/treatments available, and he is doing his best for me to get it. I felt overwhelmed again and pushed my tears back. (I cried too much.) Inside of me, I was shouting at him, “Oh you are wonderful doctor. THANK YOU. THANK YOU!!!” Whenever I voice my appreciation, he always tells me, “I’m just doing my job.” (Nothing special. Nothing to be thanked for.)
He also told me that there are some researches being done. One of them is by Prof Lloyd at University of Sydney. I hoped it was not for psychology, and he quickly said it was not for psychology. When I googled (he knew I would), the research was for something to do with molecule change due to infections. I guess this is the job to find out causes of symptom. Once again, he told me, “Asthma once believed to be psychological illness, not physical. And there are other people who are living with ME/CFS. Actually, you are the second person I saw today.” I felt bit guilty of making him convincing me that he really believes that ME/CFS is not psychological problem. In his mind, psychology doesn’t even come near to ME/CFS. It has been very clear to me. Once again, I felt overwhelmed by the fact that I actually have a healthy doctor and patient partnership. In my past, I honestly believed that I would never have a compassionate doctor…
Now, I will wait for a letter from neurologist and see if he/she would give me MRI. I don’t know if I can visit the neurologist or get to the MRI. But I will worry about it when I get the letter.
My friend, M told me that I would not be able to make it by myself because it will be too much for my condition. Then, she kindly offered to take me there. I know that I should accept her offer. She is right. I cannot go through it without support, driving to a busy unknown area, dealing with unknown place and procedures. She gives me motherly kind of love. She makes me feel as if I am a little child and am protected by her love. She is filling a big hole that should have been filled by someone else when I was a child.