tag:blogger.com,1999:blog-679982583847135662.post7693491240295705278..comments2022-07-27T00:08:13.293-07:00Comments on The Original Dragon Mother: #RABlog Week 2016: Post No.2Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-679982583847135662.post-1958818946628766532016-09-27T23:27:30.895-07:002016-09-27T23:27:30.895-07:00I like that distinction on who's the expert on...I like that distinction on who's the expert on what - I always forget that!Kazhttps://www.blogger.com/profile/06883203750700550391noreply@blogger.comtag:blogger.com,1999:blog-679982583847135662.post-6192370819098475132016-09-27T23:05:53.061-07:002016-09-27T23:05:53.061-07:00Excellent definition of reactive and active, and y...Excellent definition of reactive and active, and you are clearly active, intelligent and educated. Becoming the disease is becoming passive and in some ways feels like giving in, or giving it all over to someone else. We only get one life, and if it happens to include a chronic illness, we have to adapt. And for me, that means taking charge, and being involved in teh decision making. My rheumatologist is the expert in rheumatology, but I am the expert in ME, and on that basis we work together.Chick with Flarehttps://www.blogger.com/profile/15118321769053544673noreply@blogger.comtag:blogger.com,1999:blog-679982583847135662.post-70472849419976929822016-09-27T17:29:52.130-07:002016-09-27T17:29:52.130-07:00Thank you for your feedback, Marianna. Mum would b...Thank you for your feedback, Marianna. Mum would be laughing at me, for sure! <br />Yes - I'm fiercely anti-labels...and that's got a lot to do with my refusal to 'become' my disease. Further back in the blog, you'll find a post I wrote about Inspiration Porn - and that was a big part of it. Because it's not necessarily just having medical stuff attributed to the disease (although, that's a biggie, because so many new things can be missed that way), it's also the excuses that can be made, and concessions made unnecessarily. <br />At the time I entrusted my care to a GP, I had a wonderful GP who never hesitated to strong arm me if she felt it was appropriate, and we had an entirely collaborative relationship, re my care. So to was the GP I had much later in Sydney - to whit, her refusal to order prescriptions with repeats for the pain meds until such time as I'd been to a rheumatologist and we'd worked out what was going on! Kazhttps://www.blogger.com/profile/06883203750700550391noreply@blogger.comtag:blogger.com,1999:blog-679982583847135662.post-68425090214633019172016-09-27T17:02:58.259-07:002016-09-27T17:02:58.259-07:00Karen, there are so many things in this post that ...Karen, there are so many things in this post that I love and agree with that the easiest way for me to comment is in numerical order:<br /><br />1. Generalizations - it's an important point that you make and I'm sure that if your mother were here, she would have a twinkle in her eye. To be fair to all of us who wrote about today's prompt, the selection was narrow. Generalize away!<br /><br />2. It's important to guard against "becoming our disease". We are so much more. A label is a shortcut, but it does us a disservice. Also, I remember one enlightened doctor once telling me that sometimes the worst thing that can happen to a patient is to get a disease label. He explained that from that point on, it becomes easy to attribute every medical problem to XYZ condition.<br /><br />3. You made an interesting decision to entrust your care to your GP. Some good sleuthing on your part re. low-dose Valium. I believe that when a patient has the "steering wheel" the positive feelings they have go a long way to reducing stress, which in turn, can impact the immune response.Marianna Paulsonhttps://www.blogger.com/profile/09259256239406236100noreply@blogger.comtag:blogger.com,1999:blog-679982583847135662.post-75710144813636062182016-09-27T14:43:20.407-07:002016-09-27T14:43:20.407-07:00My guy was younger than me - scary though, those y...My guy was younger than me - scary though, those years ARE adding up, whether I like it or not - and has a mother in law with RA, which perhaps gives him that big more insight, since he DOES see the every day effects, where most of them have to rely on us to hear about them, but don't see what it's like day and and day out. But he's quite insistent that he needs input from the patients if he's to treat us properly. He also knows that I'm an admin in an online RA group, and always asks what the discussions are there and what the 'climate' is like, what people are talking about. He's interested in my writing, particularly the writing around RA and has been more than happy to give me the doctor's perspective on issues that I've written about, which has been marvelous. I'm just hoping the colleague he's referred me to down here is as good, I really am!Kazhttps://www.blogger.com/profile/06883203750700550391noreply@blogger.comtag:blogger.com,1999:blog-679982583847135662.post-33680410214925030602016-09-27T14:38:37.671-07:002016-09-27T14:38:37.671-07:00Ha! Rick you are funny :-) You do have a point tho...Ha! Rick you are funny :-) You do have a point though. I liked the environment in the hospital much better, and having a crew of people that I'll see every month and be able to get to know. But also, the reassurance of knowing that should anything go wrong, there's back up there. It's a private hospital, so there was a full admissions process and an actual BED to get comfortable in, and the woman in the other bed was an artist too, so we talked shop most of the time, which was fun!Kazhttps://www.blogger.com/profile/06883203750700550391noreply@blogger.comtag:blogger.com,1999:blog-679982583847135662.post-48855846572260978082016-09-27T14:35:46.892-07:002016-09-27T14:35:46.892-07:00My take on it is that this is something very big t...My take on it is that this is something very big that's happening to ME, in MY body...and it makes no sense to not learn as much as I can and be as informed as possible. The real trick is finding doctors who will work collaboratively. So far, so good, and in November I'll see the new rheumatologist, and hopefully he'll be as my Sydney doc assured me. Kazhttps://www.blogger.com/profile/06883203750700550391noreply@blogger.comtag:blogger.com,1999:blog-679982583847135662.post-68942947133388605392016-09-27T14:08:40.776-07:002016-09-27T14:08:40.776-07:00My new rheumatologist is the same way. He is proba...My new rheumatologist is the same way. He is probably only 5-10 years older than me and recognizes that my 34 years living with this disease may actually count for something. He knows that I am an active, educated patient, involved in the greater arthritis community and he treats me with the respect of a peer. We spend half of my appointment talking "shop," the state of rheumatology, new discoveries, new advocacy efforts. It feels so amazing to be treated with respect and with the acknowledgement that I may not get all the science but that I get much more than a lot of docs give us credit for. Drayhttps://www.blogger.com/profile/09534326210754217607noreply@blogger.comtag:blogger.com,1999:blog-679982583847135662.post-66616332166623613742016-09-27T13:23:58.931-07:002016-09-27T13:23:58.931-07:00I personally love getting infusions. I think I li...I personally love getting infusions. I think I like taking the time to sit and listen to music or maybe I moslty like the special attention. I am a bit of an attention hog or so I am told sometimes. Rick Phillipshttps://www.blogger.com/profile/06927227605885917738noreply@blogger.comtag:blogger.com,1999:blog-679982583847135662.post-10585577344794841862016-09-27T09:45:26.166-07:002016-09-27T09:45:26.166-07:00I agree with you 100%. I don't consider myself...I agree with you 100%. I don't consider myself a noncompliant patient, as I want to know what I am up against and not just do something, because my doctor wants me to. I have always been analytical and that has not changed, with this journey. Great read and I can see, you have done your research. Brendahttps://www.blogger.com/profile/03920468487576014196noreply@blogger.com