Friday, May 31, 2013

Trust is a Real Gift

Although this isn't him, the Maine Coon cat pictured above and found on Wikipedia looks just like our Louie, may he rest in peace...

I'm glad to report that I'm feeling somewhat better after my little neutrophils-went-missing incident a few weeks ago.

Wow. I never want to revisit that experience again....

It left me feeling like what my dad would describe as weak as a cat. Which is kind of an interesting phrase, come to think of it....especially since every cat I've ever known actually would never have been called weak.

All of our cats have been fat and very full of beans. One in particular, Louie, was strong enough to chew his way into the innards of our couch and roam around in there. He also was responsible for most of my curtain rods in the basement windows being completely bent since he liked to perch on top of them. He showed particular strength when I would attempt to drag him off the top of the windows. Ahh. Louie. Miss you, big guy.

Where was I going with this...... Oh, right. I was feeling weak as a (not a cat). This particular flavor of tired/fatigue/weakness is brand new in my experience with autoimmune disease. Dr. Young Guy and I were discussing it yesterday afternoon, and I confessed to him that I felt kind of scared by the whole thing.

Yes, he said. You had me worried.

I was surprised to hear that since he always appears to be completely unflappable. I'm really grateful that one of us could keep their cool in the situation since I was pretty unhinged physically and mentally by then. It's been years since I went all teary-eyed in a clinic exam room. But Dr. YG's calm demeanor and quick plan of action was reassuring. I told him that I trust you, really I do!

I did. And still do.

Confidence in my care is an invaluable thing when my brain goes missing in situations like that. To be able to trust someone's abilities to the extent that I could lay my anxieties aside and rely on his judgment is a rare thing.

It's hard work being your own advocate in the health care system. It requires having a brain that is capable of remembering things, analyzing things, exploring resource type things, and feeling vigilant always. When I'm tired or foggy or flaring, I'm stupid. Seriously. Doesn't make for good advocacy work if I can't even remember my name; much less my medical history including what specific types of DMARDs that I have been treated with.

So even though I know that I praise Dr. Young Guy often, in this particular instance he especially deserves a few kudos. There's very few people out there that I trust enough to allow me to switch my brain off for awhile knowing that when I do, the rest of me is in good hands.

I've given up on my brain. But then that's a whole other discussion...

Are you thinking that I'm being a bit unrealistic here? And expecting Dr. YG to never make a mistake? Or that he would never make a decision that I would disagree with?

Of course not. He's human. None of us is perfect.

But it's so much easier to put confidence in someone who has already demonstrated that his philosophy of delivering medical care closely matches mine, and has looked for not only my agreement in my plan of care but expects me to be an active member of the decision making process.

I've told him that he can never move. Or change jobs. Ever.

What? You think THAT's being unrealistic? Nah.


Lisa said...

Julia ... you are in a very enviable position ... an established dr/pt relationship w/a rheumy who is providing you w/quality care. I can tell you that the other side of the fence ... no rheumatologist, SSA/B titers that are sky-high, and a plethora of symptoms ... is a scary place to be. I am the Anti Dr. Shopper and three consults in three years that were a farce (Wilson's Thyroid Syndrome -huh?, Osteoarthritis (take Advil), and pursuit of a Lupus Anticoagulant diag from 26 yrs ago) are experiences that have left me - a medical phobic - hesitant to try again to seek a working medical relationship such as you have established w/your DYG,,,,,

Kelly said...

We always said, "weak as a kitten," or worse, "weak as a newborn kitten." You are right. I have never met a fully grown adult cat that could be described as weak. So, let's hope you are feeling feisty as Maine Coon cat on her favorite perch these days!

annie said...

I have a question for you Julia, as I also have been going through a very low period of energy lately, worst than normal. I just started on an antibiotic for sinusitis, but my doctor(allergist/immunologist) is concerned because my body temperature is sometimes quite low (96.0). Is this something that other sjoggies experience,maybe because of raynaud's syndrome ? I keep forgetting to mention this to my rheumy, and my family doctor is not worried at all about it, but I wonder if autoimmune illness has something to do with this.