Part of this was written about a month ago, the rest edited and added upon today.
Today was a strange visit. It was like a test, only they didn't know it. But after my hospital fiasco last month, I sorta wanted to know where I stand in the we-really-do-care-about-you line. To me, I want a doc who actually gives a fuck about me. I know there is a line that a lot of docs try not to cross so that they can see their patients in a mecial and treatbale way without letting personal opinion get in the way. But I think new medicine is hopefully trying to get past that and really see the patient as a person. So I have trouble going to docs who don't seem to give a shit. My rheumatolgist doesn't remember my name when she walks into the room whereas my ENT personally calls me to see how I'm doing. Who do I trust more? Sure, the rheum might be a genious, but she doesn't act like she cares. I guess I am a sucker for heart over brains.
anyway, so I've FINALLY met my out-of-pocket for the year (please pay for the hospital, thanks). So I switched my visit to today from Jan. That gives me, barring illness (~fingers crossed~), until March when I need to be seen again. We are literally drowning in medical bills, so the longer I can push things off, the better.
(I don't say anyhoo ever in real life, but for some reason I seem to like to use it in writing. I wonder is this means that underneath, I really am the kind of person who would say anyhoo? I imagine that kind of person to be like Marty McFly. So I'm an inner Marty McFly),
my purpose today was to talk about my bowels (FUN!) and ask about what actually happens in my clinic when I go in for a tune up. I have managed - somehow - to avoid the 'traditional' CF tune up for 33 years. I was pondering today just how I managed to do that and I think I was a master avoider and liar. This makes it hard now that I am actually coming clean with how I truly feel. I feel like such a complainer and that people think I've deleoped hypochndria, but the truth is I've almost always felt this way, I just denied it and kept quiet.
So, there was a nursing student with my intake nurse and I totally crawled out of my shell and asked her, while my blood pressure was being taken (155/80 and then 135 over something - WTF is up with that? - I wonder if I was that out of breath coming up from outside that my heart was still racing?? oy) if she had any questions for me. and she did! and we talked about CF for a good 15 minutes (which is a lot in a med office, dontcha think?). She asked about the severity of my disease. I explained to her that while I am relatively healthy for my age, that my genetic make up is really no different than most the other patients she'd seen. I told her that as far as my version of CF and being "mild" goes that I think there is just a line from birth to death that a Cf patient takes (or anyone, hell) and we just all plot at different points on that line at different times.
Comparing my disease at 33 to someones elses at the same age is like apples and oranges. Instead, compare where we are - no matter our age - in the progression of the disease. It seems Cf can be sneaky, holding one person at bay with 25% lung function for years while another winds up vented and dead with a higher lung function in a quicker time.
She asked me what one thing I would want people to know in the medical field and I told her that I wanted people to hear what I was saying and to believe that I know my body. Also, the point of my visit was to establish that I truly need a good doctor/nurse - patient relationshsip established. With everyone farming people out to specialists for every ailment, you see a doc maybe for 10 minutes a year depending on the problem (like my dermatologist).
This is why I push my CF clinic to care for everything they can and will, be it my joints, intenstines - whatever. It's all related to that damn gene anyway, right? I mean, I don't want a pap from my CF doc, that would be awful, but I would like to be able to talk sex or birth control or incontinence without an immediate "let's get you into a specialist!"
It was a fruitful conversation and I felt good not just nodding pleasantly and wishing she'd move on, as is my tendency.
As for my doc. I'm working on him, but after being back in town for about 13 years and seeing him for that entire time, I have come to decide I like him. I hope we can carry our reltaionship out for the duration of my care, be that ending in death or TX (this does assume that he works as long as I live and I don't outlive his retirment. But that's not something to dwell on now, is it?).
But I was peeved that I didn' get much (any) hospital attention. I find myself becoming sort of a medical diva. Well, maybe I'm totally not a diva, but I am willing to be a lot more demanding than I ever was before. I can't let myself get swept under the rug. I don't think docs purposefully do this, there's just too many patients and too little time.
A doc here in town was thinking of opening a naturalist kind of medical center, incorporating herbal remedies, nutrition, acupuncture, yoga etc. with Western medicine. It was going to be a women's clinic. Of course all those natural extras would be out-of-pocket except for those lucky ones whose insurance covered something like that. That in turn greatly reduced the type of patient who would be able to afford such services. I was invited to a forum to discuss what this new women's center would look like, what services it might offer, and what wasimportant to the patient.
I kept lamenting insurance woes and how I fel they needed to fight insurances to try to cover some of these services such as acupuncture because otherwise it creates the inability for such a clinic to truly offer that kind of care to the masses. The concept presented by the staff was that this would be something new and exciting and the patient would be top dog. Without making it available to any who needs it, it just seemed to me like any other money making venture. It becomes elitist. This isn't necessarily bad save for the fact that none of the women present were overly wealthy or could outright afford for these services with any regularity.
The biggest suggestion all the women had on this panel was that they wanted a personal connection to their doctor. Many of them were there because they were patients of the doctor who wanted to open the clinic and were quite fond of him. The thing that irked me was if he was as great as they all put on, why wasn't be present at his own community panel? 'Cause the only person there was the manager or PR person, or whoever she was, hired to help get this thing up off the ground.
Where the hell was this great doctor everyone loved and who was so concerned with our opinions on his new medical spa or whatever? To me that stuck out like a sore thumb.
My goal for 2011 was to write more and be happier. This post may not adequately reflect my happy demeanor.
because blogs with photos are more fun:
Mi hijo last summer
Miss M in the hat I crocheted for her for the winter
proof that I'm happy. really.