Wednesday, October 26, 2011

My continuing saga...

Nope... Didn't speak too soon. Oy vey. My doctor still thinks I don't have what I have even with the blood results. I had to pull hospital administration in again to get her to contact me. I had my other doctors look at the test results and they agree I have an abnormal response. She's the one who is still insisting she knows best, even with evidence to the contrary. I'm done. I've talked to administration and they're going to switch me to one of the fellows. I can't afford to be down for several months, so I'm going to ask if there's another way to get these results to finally show one way or another. (I know there is. It requires hospitalization, however, because of the risk to life.) But, I'm also going to explore the other avenues she proposed. I have to eliminate all other possibilities, so I need to explore cardiology and neurology. I've got a lot of work ahead of me.

In the world of the strange and wonderful, I don't have Sjogren's Syndrome!! I don't know how on earth that happened, and neither does my rheumatologist. We discovered an issue where he has the records from my previous rheumatologist that discovered the Sjogren's, but he doesn't have the actual lab reports. I put in a call to my old doctor to see if we can't hunt those labs down.

I'm still shocked. Now the theory for my pain is either central neuropathy, fibromyalgia, or both. He's leaning towards both. Problem: there aren't many medications or therapies available for the treatment of either. There are about 5 medications, and I've been on all of them. A lot of them I had a severe side-effect that made it impossible to continue the medication. It's no good to ease a pain problem while causing a cardiovascular problem.

To complicate this, my kidneys are complaining. My rheumatologist has had me swear off NSAIDs. No more Aleve, no more Advil, no aspirin, no more Toradol in the ER. I need my kidneys to last. That's kinda important. Right up there with the heart. My doctor warned if I don't nip this in the bud now, I would need dialysis later on. No thank you. I go to the infusion center for testing often enough. The good news is we've caught it early enough. I can change my behavior and stave off future problems. Still, I have to now inform doctors that I've got the early signs of kidney disease. That's not something I wanted to add to the list.

I've scheduled a follow-up with my GP to get him up to speed on everything, also to get me to the doctors to explore the other theories. I'd love to go to a cardiologist, because I know I'm in terrible shape, and my heart probably matches. Cardiology is pretty straightforward. I'm not frightened of those doctors. Neurologists, on the other hand... they deal with spooky things like receptors in the brain and salt channels in the nerves, and all sorts of stuff we don't understand. I've had some horrendous experiences with neurologists and even worse with neurosurgeons. I'm very trepidatious and nervous about dealing with one of those.

But we need more answers. I want answers. There's no question that I'm sick. The question is what to do about it. In order to know which solution to choose, we've got to identify what's going on. I wouldn't want my doctor to operate on a healthy leg. I don't want to take a medication for a condition I don't have.

These are complications that I did not expect. Not one bit. But that's life, neh? Time to make the best of it.

Friday, October 21, 2011

The Myth of Doctor Knows Best

Doctors shouldn't have personal opinions. At least, that's the anecdotal evidence I collected in a recent online survey. All the patients I talked to said they would find another doctor if the one they saw a doctor who took their patients' health decisions personally. We believe, pretty unanimously, that our health decisions are ours and ours alone. That the doctor is there to provide council, advice, access to therapies, medication and aid devices as needed---without judgement. It's our belief that it's none of our doctors business why we refuse a suggested course of action. The doctor should never be offended if we don't agree with their suggested course of action. As patients, we should know all our options. And doctors should always be professional, never personal. "My body, my life," is the overwhelming consensus among patients.

But from the doctor's point of view, they're the ones who got the education. They're the ones who woke up for those 8am classes and studied instead of partying as an undergraduate. They're the ones who slaved for the MCAT. They're the ones who memorized all the bones, muscles, and half a million other things. They did the residencies working in crisis conditions. They're the ones who have seen people with conditions worse than yours. They KNOW. They've worked hard to get here. They have the degrees to prove it. Why aren't their patients more trusting? Why aren't their patients more grateful?

One difficulty with assuming "doctor knows best" is that our understanding of our bodies and how they work is evolving every day. There are studies out now that show that, "You can look great in a swimsuit and still be a heart attack waiting to happen. And you can also be overweight and otherwise healthy. A new study suggests that a surprising number of overweight people -- about half -- have normal blood pressure and cholesterol levels, while an equally startling number of trim people suffer from some of the ills associated with obesity." (Half of overweight adults may be heart-healthy.) We go so far as to have a world-wide campaign against obesity because "health care told us so." but sometimes our assumptions are downright wrong. We can't necessarily look at a person and know whether or not they're healthy. Not even if they're fat!

It's additionally difficult to trust a doctor's opinions for us when we know that doctors will choose more risky procedures for themselves, but won't suggest the same to their patients. Equally troubling is the recent study that showed: When you dislike patients, pain is taken less seriously. Before you say (as one article did) that the study used "observers" and not professionals like doctors, know that doctors are just as vulnerable to irrational decisions as laymen. A 1995 showed that doctors, specifically, are vulnerable to irrational decisions making: "In one scenario involving a patient with osteoarthritis, family physicians were less likely to prescribe a medication when deciding between two medications than when deciding about only one medication (53% vs 72%; P<.005). Apparently, the difficulty in deciding between the two medications led some physicians to recommend not starting either. Similar discrepancies were found in decisions made by neurologists and neurosurgeons concerning carotid artery surgery and by legislators concerning hospital closures." (Medical Decision Making in Situations That Offer Multiple Alternatives)

As a patient, I know: Caveat Emptor - Let the Buyer Beware.

Now, it's not my intention to vilify doctors. Far from it. What I'd like to offer is a way to improve your patient relationships.

First, it's not about how much you know or how much education you got. Your technical skills will be proven with the care you provide. Check your ego and emotions at the door (as much as possible).

Second, make your patients feel like the priority. "A nationwide study ...recently conducted from a sample of 10,000 individuals reveals that for physicians, the medical outcome and the extent to which the physician prioritizes the patient’s case gains the patient’s trust." (GW Assistant Professor of Organizational Sciences Nils Olsen researches how people deal with complex choices.)

Third, realize that you are just as susceptible to irrational behaviors as the rest of us. Getting M.D. tacked to the end of your name did not turn you into Mr. Spock.

Finally, "doctor knows best" is fantasy we should lay to rest... for all our sakes. It's never fun to have egg on our face. And if our doctor-patient relations is based on "doctor knows best," well, it looks much that worse when things don't turn out how we expect.

Tuesday, October 18, 2011

May have spoke (typed?) too soon...

I was slightly misled in the turnaround time by the hospital staff (irony there) and was told by a nurse I should expect a call this Thursday. I had a feeling there was a good idea in trying the office again and got a person on the phone. I kept the honey on my lips and the vinegar in my heart, and I have new hope. Always a good thing. Of course, my tune may change again on Friday! lol That's all for now. Deep in thought.

Friday, October 14, 2011

Continuing snafus = vote with your feet

It's been a week since my last test result came in. I still haven't heard from my doctor's office. I've contacted hospital administration. I was told 72 hours was reasonable. It's solidly in the unreasonable category now. I received email alerts as to these test results. She certainly did too. And now I have to wonder am I going to be cut off from the care I need and the possible cure for my disease because of one woman's attitude. That's not a fun thought. I haven't done anything wrong. Yet this feels like punishment.

I was cordial in the office visit. I told her my history. I even went along with her theories that I was autoimmune thyroid and could possibly come off my prednisone. I followed her course of action. I didn't badger the office or the staff. My messages were polite and included all the information they require (birth date, spelling of the first and last name, phone number). Hospital administration looked in to all this to see that my claims were valid. They agreed. But still this continues.

She's not on vacation any time this month. Hospital administration made sure of that so that I wouldn't expect a reply while she's out. She's been in the office all this week. There's no excuse why this would take this long.

I can't prove it, but I'm pretty sure the doctor either doesn't like me personally or doesn't like my case. Doesn't really matter. People put off what they don't want to deal with. I'm being put off. Once is a fluke. Twice is a coincidence. Three times is a pattern.

I can't make her want to work with me. I can't force her to do her job. That's only going to increase her resentment towards me, which is the last thing I need. There's really only one option.

Vote with my feet.

I'll wait to hear from hospital administration, then ask if they can find me someone who would actually look forward to working with me and can handle the rare pituitary aspect. I'm not holding my breath on that one. I've also had the experience where one bad encounter with one doctor can spoil the whole network for me. I'll also put a call into my old neuroendocrinologist and ask them if there's anyone, besides her, they can recommend in my area.

I hate this part: starting over.

Friday, October 7, 2011

Re-imagining my disease...

I like to make up stories to comfort myself. Today's pretend is that I share the same soul with a warrior nun in fantasy Shogun dimension. When I feel like my hand is being stabbed, it's because she's battling in her epic quest to save her world from evil. Something in the universe just got our nervous systems crossed, and that's how she's able to survive where others wouldn't. I wish her well! ^_^

One of the most important things I have learned over the course of my disease is that there's no use making excuses. People can't see my illness, so they don't understand what I'm going through. My disease makes me unreliable, lazy, upset, and distracted. My experience is debilitating pain, fatigue, anxiety and despair about what I'm going through, and preoccupation with managing my symptoms. But that doesn't change what it looks like from the outside. I could say it's not my fault, which is absolutely true, but that just looks like whining and excuses.

I have another option, though. I can OWN it. Yeah, I have to sit a lot. Yeah, I stroll along the sidewalk. Yes, I'm a princess and will ask for the comfortable chair from you. Nah, I don't really want to do much. Sitting and talking is perfect for me. I would fit in so well in more the relaxed, Mediterranean-type cultures.

On days when I start to get depressed about not working, I imagine that I'm one of those idle liberated aristocratic girls like in an Agatha Christie mystery. It's perfectly expected for me to take an leisurely breakfast and not leave the house until ten. Then it is customary to take lunch with friends at the club (my favorite coffee shop) and discuss events. Supper and then return home to work on my writing. Like in Cold Comfort Farm, "I hope to publish a novel when I'm 50."

On days when I'm really fatigued, I pretend that I'm a Southern Belle---a sweet delicate flower. It's perfectly fine for me to sit for long stretches, sipping iced tea and fanning myself. Running around is for children. The adults sit on the porch and hold polite conversation. It does me no good to despair over my limitations. Trying to push past them only leads to disaster. It's more responsible for me to say, "No, thank you." Yes, that means that I'm not up to the activity levels of my peers. I'm working on that. But in the meantime, it's so much better to make peace with it.

So I make up little stories. I know they're not true. But they allow me to behave in a way that is more noble and polite. It allows me to maintain my mood despite what I'm struggling with. It allows me to imagine that everything is just fine even within my limitations. I can choose who I want to be and make it awesome, instead of seeing my disease as someone I'm forced to be. It gives my behavior value. It takes away the shame and stigma for me.

What do you do to build your self image in dark times?

Thursday, October 6, 2011

Entitled to be late??

This is a repost of a comment I made over at I read that blog partially because I know I'm going to read stuff that upsets me. It helps me focus my own thoughts for this blog. But this guy got my blood boiling, I have to admit. My heart is still racing as I type this, I'm so angry. Dr. Stewart Segal insists, "A doctor cannot be on time and take care of your needs." Wow... Now, I'm only an armchair 'psychologist,' but doesn't that sound like medical narcissism? Here is my comment.

My ex-husband was in the Navy. Whenever we traveled, we always planned to show up at home a full 36 hours before he had to report back to the base. Sure, the flight may only be 4 hours, but a lot of stuff can go wrong from point A to point B. The only excusable reasons for not showing up on time are: you're in the hospital, you're dead, or there's a national crisis (9/11).

You guys *know* you deal with crisis situations. That's in your job description. They tell you in school. They train you for it. You do your residencies in ERs.

What I want to know is that if all doctors are chronically late, why not PLAN for that. Sure you can't plan for the emergencies, but what about scheduling HOUR appointments instead of 15 minute ones? Sure that may mean there are block of free time where you don't *need* the full 60 minutes... But all y'all hope for the best every day without planning for the worst. That seems foolish to me.

And I think it's absolutely correct for me to demand that of my professionals. You get higher social status, you get better paid, better treated... It's not unreasonable to hold you responsible for your schedule. If any GED kid in the military can pull it off, why can't you?

The thing that I hate about that article is if you boil it down, essentially he's saying, "Oh, it's okay for me to hurt you because it's not really me hurting you, it's these other emergencies. It's not my fault. I don't need to take responsibility."

And you can try to blame this song and dance of "NOT MY FAULT!" on modern litigation, except that same attitude existed in 1847!!! [Medical Arrogance and the Effects of Prejudice]

This is a problem with DOCTORS. It always has been. And the sooner they wake up to that fact, the sooner the healing process can start.

Wednesday, October 5, 2011

Have I earned treatment?

I was good. I was compliant. I went on less prednisone. I suffered the expected complications. Now the test results have come back and my doctor has struck out. My adrenal glands were supposed to double their output. They only increased output by 30%. That, with the other tests, is proof positive of my pituitary disease. The BIG question now is, will my doctor change her tune? Will she admit I was right?

I'm surprised. I expected my cortisol stim test to come three months from now. I was supplied three months of lower-dose prednisone. I have a sneaking suspicion this is because she expected to be able to take me off my prednisone. I suspect she was assuming she had to be right. I really hope she doesn't react poorly to the egg on her face.

I'm hopeful she'll now be able listen and provide care. But if she already sees me as a "problem patient," I may be screwed out of care regardless of proof. It's happened to me before. This time I kept my mouth shut. I let her have her beliefs. I went through the tests as she asked. But I did lay the groundwork for my back-up plan. Hope for the best; plan for the worst.

I've been in contact with the hospital administration. I've been very polite in expressing my displeasure. I was conservative in my protests about the unreturned phone calls and lost orders. The administration is going to make sure that I get contacted in a timely manner. I said 72 hours after the test results are posted. They agreed that's completely reasonable. I expressed my concern about not being believed, and the possibility of switching to a different doctor if this doesn't work out. They're on standby in case this goes south.

But I want to give my doctor a chance. I want to give her the opportunity to correct her mistakes. I don't need my doctors to be right all the time. That's unrealistic! But I do expect them to follow the evidence. I do expect them to change their theories to fit the facts. if she does that, I'm good. If she doesn't... Well, then it's time to vote with my feet.

The thing I'm worried about is that most endocrinologists, to their own admission, don't know how to deal well with pituitary issues; they're relatively rare. When it comes to my disease, the neuroendocrinologist has the technical skills and training I need. Finding someone else who can handle my disease is going to be tricky. And I fear trying to find a doctor at the same hospital may be drawing water from an already poisoned well. I know doctors, nurses and staff gossip about their patients. It's a possibility an in-house switch would do me no good.

These are the possibilities for the future I see: the good, the bad, and the ugly. But regardless of the outcome, I'll continue to work my way back to wellness with the best attitude I can muster. It's just a question of how much work that's gonna take.

Time to stop worrying about it. The clock is ticking. She has 72 hours starting from noon today (11am, really, but what's an hour between friends?). Until then, I will occupy myself with other interests.

Cross your fingers for me.

[Edited to add, March 8, 2012]
Nope.... never did earn treatment. Flying back to my old endocrinologist in Seattle.

Tuesday, October 4, 2011

The Pros & Cons of Doctor-Patient Interactions

There are a lot of ways doctors are primed against patients. Frequently these are professional, psychological studies on "difficult patients." The problem is when you're a hammer, you can start to see everything as a nail. Doctors are problem-solvers. They expect to deal with problems at every patient encounter. However, it's not fair to see every patient interaction as a problem. Here's a list of pros & cons (and cons & cons) for patients when they deal with doctors.

Pro- you take responsibility for your health.
Con- "too many doctors encourage---or even demand---that [you] identify them (the doctor) as the sole source and authority for [your] medical care."

Pro- you're well educated on your disease and you know what you need based on what you've been through in the past.
Con- you get labeled as an "entitled demander" who is expected to "become hostile"... "if the doctor does question the demand."

Pro- you're vigilant about your symptoms, keeping records of how you're doing so the doctor can have a complete documentation of your disease.
Con- "Patients deemed difficult included those with more than five symptoms..."

Con- you have symptoms that are difficult to treat.
Con- "It is much easier to say, "She is such a difficult patient! She is never happy with her care!" than to say, "I feel angry and helpless when I see her because it seems like nothing improves her symptoms!""

Con- you have symptoms that can't be seen on a scan or proven with a blood test.
Con- you're seen as a patient "who repeatedly complain[s] about symptoms for which no physical cause can be found"

Con- you have chronic pain.
Con- "Treatment of chronic pain puts doctors in a no win situation."

Just because a patient comes with problems doesn't mean the patient is a problem.