Explaining VNs Autoimmunity gave opportunity to explain about hardly spoken ME/CFS symptoms. I was grateful that Dr TL asked about the book and engaged in discussion.
I quickly mentioned that the third replicate study of XMRV failed to prove the link between ME/CFS. Dr TL googled about the news and read it. Although the scientists argue the method was not right, it cannot stop from people losing interests in XMRV and ME/CFS. We agreed that it was a disappointing news.
Dr TL suggested that I should volunteer for ME/CFS. I’m humble that he has trust in me. I explained that ME/CFS is a big ocean. There are different beliefs, different treatments, different attitudes, and a big mess. I want to contribute something, but I just don’t know how and what. I belief if I’m meant to do something about it, the opportunity will come to me.
Our conversation shifted into attitude of people with ME/CFS. During the discussion, he told me his challenges as a doctor. Not every patient is grateful for his support. Some misunderstands his well thought advice as ignorance or arrogance. Sometimes, people prepare to hear only negatives…
I notice time is slowly changing. When I started blogging, I only came across to blogs about horrible experience with their doctors. Nowadays, I’m noticing blogs about heart warming encounter with their doctors. This small change in air gives me hope. I know there are still horrible and ignorant doctors out there and it is still majority. Yet, it is nice to see there are good doctors out there and something is changing for positive.
We also touched on subject why people with ME/CFS are sensitive to advice on exercise.
When Dr TL got me started on exercise, he explained that he wanted me to stop muscle waste or deconditioning. He doesn’t believe muscle waste is the only reason why I’m sick and disabled. It is certainly not the cause of ME/CFS. But he explained that it comes with any chronic condition if we don’t do much activity, and it is important to prevent it.
My exercise is nothing like running, walking or swimming. He knows I cannot do these kind of exercise. Instead, it is a gentle muscle training and balance rehabilitation. He was extra careful on introduction, and he gets innovative and creative about exercises that would be beneficial for me. And he monitors progress and make adjustments if necessary. There is nothing I need to get panicked about.
He thanked me for being open-minded patient. I’ve never heard of “open-minded patient”, and certainly wasn’t imagined being thanked for it. He didn’t just say it as a courtesy. I felt it was coming from his heart.
There is much more to thank him for being an open-minded doctor. I honestly don’t know how I could keep going if I didn’t have him. Whenever I have an opportunity, I would like to let him know how grateful I am to have him and how much he is helping me. And I know he would just say, “It’s my job. I’m a doctor” with gentle smile.
We also confirmed how I’m getting better. About 2 and a half years ago, I was close to very severe and severe. I had to lie in the different room while I waited for my appointment. These days, I would say I’m between severe and moderate. I can sit on a chair while I wait for my appointment. It is a proof that he is doing something right.
Other than ME/CFS, he has detected my lung problem early and gave me treatment. It is giving me much longer years before the condition gets really bad comparing to the problem is never detected until it gets bad.
He is my miracle. And I’m a very lucky person to have him.
He also mentioned that he could tell I was in flare up from watching me walking and noticing difference in my voice. He must be aware of my upset last week, and it was his way of showing his support.
Before we said good-bye, I mentioned that I wanted to ask him about Tilt Table Test (TTT) at the next appointment. It was getting late and he had a long busy day, so I felt it would be better to discuss about it next time.
I was also nervous about asking for TTT. I didn’t want him to think I am challenging him. He knows about dysautonomia and he tried testing it several times. So far, they all showed negative.
I’m aware that this is ME/CFS specialist territory, not GP’s. As far as I know, there is no ME/CFS specialist in Qld. I had to take my chances with my GP.
I briefly mentioned strange behaviour in ME/CFS related dysautonomia, and we need to have TTT to identify the problem. I’m also curious to know what kind of dysautonomia I have, if I have it. Since my blood pressure also goes up, it cannot be simple POTS. My friend gave me names of cardiologists and private hospitals who does TTT in Qld.
Since the repeated in-office tests showed negative, I feel really awkward whenever I need to mention about the near syncope and paralysis incidents.
He didn’t wait. He quickly explained about test he does to detect it. I reminded him that it doesn’t behave normal when ME/CFS is involved. (Dr Staines VNs Autoimmunity hypothesis can explain the reason why.)
Dr TL honestly told me that he hasn’t done TTT yet. But he sounded a little excited about the challenge. He told me he was going to write a letter to PA Hospital (public). There was no awkwardness, resentment or negative feelings that I feared. It was a great relief that he didn’t take it to wrong way.
It was much better outcome than I hoped. He is aware of my financial situation and takes consideration without hurting my pride. If PA Hospital agrees to test it, I don’t need to pay private medical fee for the test.
It may sound a little arrogant, but I proudly felt we are a very good team. It feels great to have something positive, reliable and proud in life.
The bad mood I thought I would carry for a very long time was gone just like that.
Explaining VNs Autoimmunity gave opportunity to explain about hardly spoken ME/CFS symptoms. I was grateful that Dr TL asked about the book and engaged in discussion.
I quickly mentioned that the third replicate study of XMRV failed to prove the link between ME/CFS. Dr TL googled about the news and read it. Although the scientists argue the method was not right, it cannot stop from people losing interests in XMRV and ME/CFS. We agreed that it was a disappointing news.
Dr TL suggested that I should volunteer for ME/CFS. I’m humble that he has trust in me. I explained that ME/CFS is a big ocean. There are different beliefs, different treatments, different attitudes, and a big mess. I want to contribute something, but I just don’t know how and what. I belief if I’m meant to do something about it, the opportunity will come to me.
Our conversation shifted into attitude of people with ME/CFS. During the discussion, he told me his challenges as a doctor. Not every patient is grateful for his support. Some misunderstands his well thought advice as ignorance or arrogance. Sometimes, people prepare to hear only negatives…
I notice time is slowly changing. When I started blogging, I only came across to blogs about horrible experience with their doctors. Nowadays, I’m noticing blogs about heart warming encounter with their doctors. This small change in air gives me hope. I know there are still horrible and ignorant doctors out there and it is still majority. Yet, it is nice to see there are good doctors out there and something is changing for positive.
We also touched on subject why people with ME/CFS are sensitive to advice on exercise.
When Dr TL got me started on exercise, he explained that he wanted me to stop muscle waste or deconditioning. He doesn’t believe muscle waste is the only reason why I’m sick and disabled. It is certainly not the cause of ME/CFS. But he explained that it comes with any chronic condition if we don’t do much activity, and it is important to prevent it.
My exercise is nothing like running, walking or swimming. He knows I cannot do these kind of exercise. Instead, it is a gentle muscle training and balance rehabilitation. He was extra careful on introduction, and he gets innovative and creative about exercises that would be beneficial for me. And he monitors progress and make adjustments if necessary. There is nothing I need to get panicked about.
He thanked me for being open-minded patient. I’ve never heard of “open-minded patient”, and certainly wasn’t imagined being thanked for it. He didn’t just say it as a courtesy. I felt it was coming from his heart.
There is much more to thank him for being an open-minded doctor. I honestly don’t know how I could keep going if I didn’t have him. Whenever I have an opportunity, I would like to let him know how grateful I am to have him and how much he is helping me. And I know he would just say, “It’s my job. I’m a doctor” with gentle smile.
We also confirmed how I’m getting better. About 2 and a half years ago, I was close to very severe and severe. I had to lie in the different room while I waited for my appointment. These days, I would say I’m between severe and moderate. I can sit on a chair while I wait for my appointment. It is a proof that he is doing something right.
Other than ME/CFS, he has detected my lung problem early and gave me treatment. It is giving me much longer years before the condition gets really bad comparing to the problem is never detected until it gets bad.
He is my miracle. And I’m a very lucky person to have him.
He also mentioned that he could tell I was in flare up from watching me walking and noticing difference in my voice. He must be aware of my upset last week, and it was his way of showing his support.
Before we said good-bye, I mentioned that I wanted to ask him about Tilt Table Test (TTT) at the next appointment. It was getting late and he had a long busy day, so I felt it would be better to discuss about it next time.
I was also nervous about asking for TTT. I didn’t want him to think I am challenging him. He knows about dysautonomia and he tried testing it several times. So far, they all showed negative.
I’m aware that this is ME/CFS specialist territory, not GP’s. As far as I know, there is no ME/CFS specialist in Qld. I had to take my chances with my GP.
I briefly mentioned strange behaviour in ME/CFS related dysautonomia, and we need to have TTT to identify the problem. I’m also curious to know what kind of dysautonomia I have, if I have it. Since my blood pressure also goes up, it cannot be simple POTS. My friend gave me names of cardiologists and private hospitals who does TTT in Qld.
Since the repeated in-office tests showed negative, I feel really awkward whenever I need to mention about the near syncope and paralysis incidents.
He didn’t wait. He quickly explained about test he does to detect it. I reminded him that it doesn’t behave normal when ME/CFS is involved. (Dr Staines VNs Autoimmunity hypothesis can explain the reason why.)
Dr TL honestly told me that he hasn’t done TTT yet. But he sounded a little excited about the challenge. He told me he was going to write a letter to PA Hospital (public). There was no awkwardness, resentment or negative feelings that I feared. It was a great relief that he didn’t take it to wrong way.
It was much better outcome than I hoped. He is aware of my financial situation and takes consideration without hurting my pride. If PA Hospital agrees to test it, I don’t need to pay private medical fee for the test.
It may sound a little arrogant, but I proudly felt we are a very good team. It feels great to have something positive, reliable and proud in life.
The bad mood I thought I would carry for a very long time was gone just like that.