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O-Dark-Thirty… listening to iHeart radio on the Echo Dot my boss got me for Christmas. I was kind of looking for a gift card, but I’ve decided I really like this option better. I don’t have to use my phone … Continue reading
Let me start by saying that I hate paying $6 every time I have to go for an Orencia infusion. I know it is a little thing, but parking, in general, irritates me a lot. I also hate knowing that they bill almost 10,000 a month for my office call, chair rental, infusion center rental, soda crackers and cranberry juice. I’m REALLY counting on what the insurance company saying being true… that after I hit $3500 out of pocket, I won’t have to pay any more the rest of the year. Except for prescriptions, those come out of a different company and a different bucket (and SO don’t get me started there).
I don’t like knowing that the Intercontinental hotel is DIRECTLY attached to my clinic. That tells me that it is probably billing way more than is absolutely necessary.
All that said, I messaged my Dr through the online thing, and she called me back to talk. She asked that I call her, asked that I just stop in her office, asked that I call her to follow up and asked again today that I call her on Monday. This is a doctor that has crappy ratings in the rate your doctor thingys.
The place is expensive, but… She listens… I miss Dr Booth incredibly. I love her sense of humor and the fact that she always remembers everything about everyone in my family. But Dr Gota cares. She might not care the way other doctors show it… or the way some patients think she should, but she’s very matter of fact and to the point and she follows up. She uses the computer for her records and takes copious notes, but when it comes time to be poking and prodding, she does that just fine.
I don’t always like the look on her face. I certainly don’t always like being sent for x-rays and blood work. But we have ruled out that anything is broken and we know that I waited long enough for my diagnosis that I already have significant wearing in the joints. But we know. And knowing is half the battle.
I’m looking at being able, in the next couple months, to change to a more local (and a not pay to park) rheumy. But I’m not entirely sure that’s what I want. I don’t like the cost. I don’t like being slapped in the face with some of the reasons why the cost is what it is. But… I like her. I think I want to stay anyway.
The decisions that I know I have to make because I have to be comfortable with my care because it is for a long long time, but I have to think, too, about all of the cost… what to do, what to do…
That is part of my uncertainty today.
I’ve been reading some posts on my RA discussion groups 0n facebook about people trying to decide if they should get a rheumatologist or stick with ‘just’ their regular doctor. I know that it is a personal decision coupled with the decision your insurance company tends to… um… encourage you to do.
I was lucky. My PCP encouraged me to go to a good Rheumy. I have a hunch, now, that she just really didn’t want to deal with me and the obvious problems that putting off going to the doctor about my symptoms for SO long was causing. But I know that it was also the best thing she could do for me. Dr Holly suggested a couple doctors, one that they tend to try to send people to and another one if the suggested one didn’t suit… I called Dr Booth and I’m so glad I did.
Having a Rheumy on your team gives you someone who really understands your condition, they understand what your body is going through and they have the background to tell you that this doesn’t work or that might help or don’t listen to the people who preach something else.
She talks to me at every appointment about what she sees in me, what I’ve been going through, what I’ve been up to, what the meds are doing to my body. She tells me about the up and coming stuff in the ‘industry’ and what new marvelous drugs are being tested. I don’t qualify for a clinical trial. I don’t have enough joints involved. But it is good to have that information.
The rheumy has the inside scoop on support groups and on exercises that you should maybe avoid given your current condition.
and they can answer all of the questions that you run into… questions that your PCP might know, or might have to research and get back to you on…
things like…. methotrexate if taken the way they used to prescribe it (a bolus dose rather than ramping up) you get horrible diarrhea … explosively… and that isn’t great and sometimes it is better to take things prudently rather than the way it has always been.
things like, be gentle with yourself, you will hurt, you will be tired, you will have horrible days and you will have less horrible days. do what you have to do to get life done. Slow down and love your good days, adapt tools when you can’t love your days, and don’t be afraid to ask for help.
So… if you have the choice… I would say… get a rheumy, even if only for a while. They are vastly knowledgeable about what your body is going through and can be one of your best tools in the world.