Confronting the ghosts of medical experiences past

May 10, 2016

Two weeks ago someone I know through my chronic pain support group asked if anyone could give her a ride to an appointment in a town that she can’t get to by public transportation. I volunteered. Little did I know.

It wasn’t until after I volunteered that I thought to ask where in that town her

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Where I walked after confronting today’s ghost.

 

appointment was. It turns out, it was at the same medical center that I went to for my entire childhood. It’s the place where I was treated badly over and over and over again.

My first reaction wasn’t a good one. I pictured the ride up that elevator. I remembered the waiting rooms. I flashed back on the parking garage. And I got really anxious.

And that’s while I was still sitting in my living room!

If figured I could drop her off, find someplace else to wait, and then pick her up. But I was still worried about how I’d react when the time came.

Then someone else in the group volunteered to take her. I told her that if she didn’t mind, it would help me out if she could go with the other person. I never told her why – why cloud her opinion of the place? I was incredibly relieved, but still, the entire thing brought back a lot of memories I’d managed to block out.

Today was different. When a friend called and said she was anxious about an appointment and asked me to go with her, I asked where it was before I answered. I’d learned my lesson. It wasn’t until we arrived at the office (which I’d never been to) that I saw the name on the door. Oh my!

This was the surgeon who messed up my treatment when I was 18. On top of that, he was a real prick. I never call anyone that, but he was. He was a jerk. An asshole. He told me that I shouldn’t complain about the pain I was in because the Olympic gymnasts (it was during the Olympics) were in worse pain (who would he know?!) and look what they could do.

If I was better at standing up for myself back then, I would have pointed out that they had a choice. I didn’t. And I would have pointed out that he was a real jerk for talking to a 17-year-old like that. And I would have never seen him again.

But I didn’t say any of that. Instead, I returned to him and let him perform surgery on me. What was I thinking?

And I saw him today. My friend asked me to go into the appointment with her. I put my feelings aside and acted like I didn’t know the guy. I supported my friend. I took notes. I asked questions.

And now I’m not sure how I feel. I went to a pretty wooded park and walked around for a bit after that. I pet a couple of dogs that people were walking (because any day I pet a dog is a good day!) But I didn’t think about that doctor at all.

Maybe I’ve moved past it. Maybe I dissociated from that guy. Maybe I’ll have nightmares tonight. Maybe this will catch up to me in a week. I don’t know.

All I know is that right now, at this moment, I’m feeling ok. I’m focusing on that. And I’m going to try extra hard to avoid horrible doctors and terrible buildings from past experiences, but I know that might not be possible. After all, I’ve seen a whole lot of doctors in over 20 years of living with chronic illness in Boston. I guess it was inevitable that I’d face some of these ghosts again. I just hope it’s the last time for a while….

Have you had experiences like these? How did you handle them? How do they make you feel?


The reminder system all doctors should use

April 14, 2016

Sometimes it’s helpful to get a reminder about a medical appointment. But sometimes it’s just really annoying.

When they call at 8:30 and I’m still asleep, I don’t want that call. When I’m busy, I don’t want that call. When I have 5 appointments coming up and they all seem to call on the same day, I definitely don’t want those calls.

Except I sort of do. Reminders can be helpful when I’m dealing with dozens of appointments every year.

And that’s why I think my dentist’s reminder system is brilliant and I don’t understand why more don’t do this.

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See this email message? How great is this?! As soon as I make an appointment I get this message. I click on one of the options. If I don’t want a reminder phone call I won’t get one! If i click to be reminded, they send another email a few days before the appointment. If I don’t click on any of the options in that message, they call me. If someone doesn’t want to give the office an email address, they call instead.

Yes, I’m sure this isn’t cheap for them. But then again, think of all of the staff hours they save by not having someone calling all of their patients! And instead of leaving messages on voicemail systems that might be garbled, they get to send a clear, simple email message.

And on my end, I find this so much better than a phone call! It’s not disruptive, I can easily see the date and time, and it’s quick and easy to respond.

A simpler version is the bland, impersonal, highly useful email I get from my naturopath a couple days before each appointment. I don’t know if she sends those manually or if they’re automated, but either way, they’re simple. They remind me of my appointment. They say the date and time. I don’t need to respond. I don’t have to do anything. I don’t even have to deal with a phone call.

Some people prefer phone calls, and it’s great that they still have that option. But it’s 2016 now. It’s about time more medical offices catch up and use email to confirm appointments. Then maybe in another 20 years they’ll be ready to use apps!

Is this unusual? What do your medical providers do? Please comment and let me know – I’m very curious!


What doctors learn from us

April 19, 2015

Most of my doctors work at one of Boston’s teaching hospitals, so I sometimes have a student or intern in the room during my appointments. This past year, there was a fellow, Dr. N, working with the doctor who I see for my sleep problems. The fellow has been really great, and I’m sad that he’s leaving in June when the fellowship ends. Before he leaves for an exciting new position, I wanted to tell him how great he’s been. But he beat me to it!

At my last appointment, I pointed out that I probably wouldn’t see him again, and he looked sad and reached out to shake my hand. Then he said, “I’ve learned a lot from you.” I was completely shocked. He was being very sincere. I could tell that he really meant it, that he had learned a lot from me. I was truly touched.

I hadn’t thought much about him learning from me. I had been thinking about all I wanted to say to him about what a great doctor he is. I still told him, and I gave him specific examples. I asked that he try not to lose his enthusiasm and caring over time.* He blushed deeply and said he wouldn’t. I hope what I said sticks with him. What he said sure sticks with me. But in that moment, as I was thinking about what I wanted to say to him, I was caught off guard and didn’t know how to respond to his statement. Now I’ve had some time to consider it.

I try hard to convince doctors to be open-minded and understanding, but I forgot what an impression I might make on doctors who are completely new to the field. With Dr. N, it wasn’t just about open-mindedness and understanding. That was part of it, but I think I showed him what a chronic illness patient really looks like. I’m guessing he hadn’t seen many yet, and probably few like me who are so proactive no-nonsense. He saw my resilience and determination. He also saw my fear and anxiety. He heard me say I was willing to try anything, but push hard to prioritize non-pharmaceutical options. He saw me work incredibly hard and try many options, even the ones I clearly disliked or feared. He received many emails from me as I tried to improve my health, emails that were always short, to the point, and respectful. He saw me struggling to stay awake in appointments while trying to joke and keep the atmosphere friendly. He heard me state my symptoms methodically, without complaining about them. He heard me emphasize the disabling aspect of my symptoms in an effort to be taken seriously, even when no one expressed doubt, and I’d like to think he understood why I felt the need to do that. In a short time, he saw and heard so much.

I don’t know what exactly Dr. N meant when he said he’d learned a lot from me. I can only guess. But I would like to think that at least one new doctor now understands more about what chronic illness patients deal with, and will show them the compassion and understanding that we all deserve.

*Note: Dr. N really was fantastic. He went out of his way to do everything he could to improve my health. On top of his magnificent efforts and attitude, he was also very knowledgeable without being arrogant. I hope he goes on to be the amazing doctor that I suspect he’ll be.


What would it look like if healthcare worked the way I wanted it to?

January 19, 2015

I write a lot about all of the small things that I think are wrong with the system and the many small improvements I’d like to see. Those are all fine on a small scale, but what about the big picture? I decided to mentally design my own fictional healthcare system. For this my 500th (!!) post, I’m laying out just a few ideas for a system that I would 1-19-2015 5-44-01 PMactually want to be a part of. But I want your input to help make this fictional system even better! So please add your own ideas in the comments!

Now, I know that none if this is realistic right now politically, but wouldn’t it be nice if……?

To start, Ms. Rants’ Healthcare System (MRHS) is a system that would put the patient first. The goal would be to maintain health and prevent illness. Let’s say that again, because that’s a big fucking deal, and something that most of us don’t experience right now.

The system would put the patient first.

The goal would be to maintain health and prevent illness.

Oh my, I’m already light-headed with excitement! Ok, so we have our goal in place. Next up, let’s make sure everyone can access it, and I do mean everyone. Sure, someone has to pay for this, but I’m thinking there would either be a sliding scale or it would be paid for through taxes. But every person would have access to MRHS, regardless of income, assets, health, sexual orientation, gender identity, race, religion, citizenship status, etc.

And since we’re talking about access, that means that every office would have the following:

  • Accessible doors, chairs, bathrooms, examining tables, and everything else for all (including those who are able-bodied, in a wheelchair, overweight, blind, etc.)
  • Well-trained staff to understand and assist with the above.
  • Translators. The MRHS would have a staff of translators all over the world, all accessible via online video. When needed, translators would also be available in person whenever possible. All documents would be available in any language needed by the patient.
  • Medical personnel available for home visits for those patients who are unable to leave their homes.
  • Appointments in the morning, afternoon, and evening as well as weekend appointments. For the rare time the office is closed, patients can go to their local hospital for no charge.
  • Reserved appointment times for those who need last minute appointments not only for emergencies, but because they can not schedule in advance. For example, a retail worker may not know their work schedule until a few days in advance, so they need the flexibility to move appointments.

Of course, MRHS would also provide transportation to appointments for those who need it.

Now let’s talk about medical records. These would be electronic and available to every medical professional in every practice. I have spoken to programmer friends who work on these kinds of things so I know it’s not realistic right now, but this is my dream, and I’m choosing to dream about a world where this is possible. Right now, my Beth Israel hospital records can’t be read by my doctor at Brigham & Women’s Hospital unless I print them out and carry them with me. In MRHS, though, every doctor would use the same system. Everyone would be connected. But it wouldn’t only be the doctors who were connected: the patient would also be connected! The patient (or in the case of a child, the patient’s guardian) would approve each doctor who would see their record, and could rescind that permission at any time. The patient would also be able to make notes in their record, pointing out discrepancies between what they said/feel/experienced and what the doctor wrote. Of course, for this to work, every patient would need internet access and a computer, but of course in the MRHS dream that’s the reality, so that each patient can also participate in online support groups and do their own medical research. Training to use the computer would also be provided.

Of course, since each patient is being given the opportunity to be an active participant in their own care, the notes they add to their electronic record will be read and responded to in a timely manner. Patients can email every doctor, nurse, physician’s assistant, and other medical professional. Patients can also enter requests for certain tests and explain their reasoning as well as request changes in medications. Medical professionals will not receive any incentives or disincentives regarding tests or treatments, so all tests will be ordered unless there is a reason not to, and all treatments will be chosen based on their likelihood of success for the patient.

All tests and medications will be covered 100% by MRHS, of course. In addition, any over-the-counter item prescribed by a doctor will also be covered. For example, the multivitamins and vitamin D that my doctors now want me to take would be covered.

And it should go without saying that all accredited medical professionals will be covered. That includes doctors of all specialties, naturopaths, acupuncturists, chiropractors, and every other medical professional. If they’ve successfully completed their training, registered, and haven’t done anything really wrong, they’ll be covered. Simple.

Now, we haven’t touched yet on what it means for a medical professional to complete their training. You see, the MRHS has a different set of criteria for medical professionals than the current systems. Each medical professional will have to go through schooling and then follow up with continuing education, as they do now in many systems, but the content of that training will be different. Yes, they will be taught biology, etc. But first they will be taught to respect patients. They will consider a patient’s experience and intuition. They will learn not to dismiss a patient’s reported symptoms simply because they are unlikely or unusual. They will spend time overnight in hospitals, being treated as if they are ill, being taken care of and woken up for tests, etc. They will experience waiting rooms. They will go to offices and sit in waiting rooms, then report their symptoms to a strange person and see what they say. Nothing can replicate the pain, fear, and uncertainty that many patients face, but it’s a start.

They will focus not only on curing illness, but on maintaining health.

They will be trained to treat all patients equally, eliminating all racism, sexism, homophobia, biphobia, transphobia, anti-semitism, islamophobia…. and all other prejudices. They will be taught how to truly listen to patients. Medical professionals across specialties will team up when necessary. A rheumatologist, neurologist, and naturopath might all consult with one another about a particular patient or about a series of patients who seem to cross their specialties. Medical professionals will never lie to patients, even if they think it is in the patient’s “best interest.” They will offer patients all potential testing and treatment options and will guide but never decide for the patient. They will take their time with each patient and be sure the patient fully understands everything and that all questions are answered.

In short, they will learn to put the patient and the patient’s health first.

In the MRHS system, pharmaceutical companies will have no direct contact with medical professionals. Instead, a web site will be regularly updated. It will list every medication. New medications will be marked as new. It will include study results, including effectiveness and side effects. It will include comments by prescribers. When prescribers have questions about a medication, they will post their question to a message board on the site. Other prescribers will answer. Pharma reps can also answer, but their screen names will show they are pharma reps. There will be no more “conferences” for specific medications paid for by the pharma companies. Instead, medications will only be discussed at medical conferences. Pharma companies won’t attend these conferences. Prescribers will present on medications just like they present on medical equipment and other treatments, studies, observations of patients, etc. They will not be paid for this in cash, meals, or any other compensation.

I know this doesn’t cover everything, but isn’t it a fantastic beginning? I would love to be a patient in this system!

I realize that at some point my perspective changed. I started this article by writing about what “would” happen, and at some point “would” changed to “will.” Normally I would go back and change that so that it’s consistent, but I like it the way it is. Right now MRHS is a dream, but I’d like us all to start thinking about it as a potential reality. If we don’t dream big, it will never happen. I’d rather dream big.

Ok, your turn: what would you change about MRHS? What did I miss? Please add your thoughts in the comments! Let’s see just how great we can make this!

And on a side note, thanks so much for sticking with me. I can’t believe this is my 500th post! How did that happen?


A life of constant experiments

December 11, 2014

When your health changes constantly and you’re trying to improve it, sometimes there’s no way to know what will help versus what will make it worse other than to try. It can be difficult, frustrating, and exhausting to have to constantly try things out, knowing they could make you feel horrible, but what choice is there? Sometimes, all you can do is experiment.

A few years ago I hated the constant experimenting. I was nervous about each one, and so many either had no effect or made things worse. It was overwhelming to be constantly thinking about which experiment I was in and which I should do next and how to control the variables.

I’ve been noticing a big difference lately, as the number of experiments has gone down. There are still a whole lot to keep track of, but over all, it’s less stressful. I try to only do one at a time, so the shorter list means I no longer have a year-long list of them waiting. Still, I get nervous.

Last month, my experiment was to start walking almost daily. More recently it has been getting my new CPAP setup to work for me. That involved further experiments with different sleep schedules. Then last week, I took a short trip. I have 2 new supplements to try and 1 prescription to start. Walking seems to be working, as long as I don’t overdo it. The CPAP setup experiment is a partial success. There’s more to be done. The new sleep schedule is a success, though. The trip was mixed, but overall it showed me that I need to improve more before I travel again. I’ll start one of those new supplements this afternoon, then the other in about a week. The prescription will have to wait until I know where those supplements stand. Maybe they’ll make me really sick, maybe they’ll help me feel better. Maybe both. Maybe neither. And that’s the “experiment” part, because I just can’t be sure.

Having relatively few experiments to do right now is a relief, but it still isn’t easy. I have to constantly think about what I’m doing and about how I feel. Friends think I just take a pill and then wait and see. But it’s not so easy when I know that pill might make me feel really sick. Should I take it today, even though I’m going out this afternoon? And if it doesn’t agree with me, will it ruin my plans for the weekend? Or I could wait. I could put it off, like I’ve been doing for the past 2 weeks. But that doesn’t help anything, it only delays the inevitable.

And of course there’s the juggling act, as I try to figure out which experiments to run in which order. Friends think my doctor decides this but they don’t. I do. My current list of experiments spans 3 doctors, and that doesn’t include the travel. There’s no one person to turn to. Besides, no one knows my body better than I do.

I feel like my own guinea pig. I don’t like it, but it works. Trying new things is the only way to feel better, either for a minute or in the long term. So that’s why I push myself. And that’s why I’ll risk ruining both my afternoon plans and my weekend plans by trying a new multivitamin today. Because despite the problems, it’s worth it if it works. I only hope it works.


Where’s my apology?

November 29, 2014

Apologies are powerful. They convey regret and an acceptance of responsibility. They are also hard to come by, especially, in my own experience, with doctors.

Over the years I have seen many doctors. Some have treated me well. Others did not. Some were dismissive, some were ignorant. I was told I was just trying to get attention or that I was imagining my symptoms. I was given misdiagnoses. I was dismissed. I was given unnecessary surgery, surgery that could have been avoided completely if the doctor hadn’t ignored some test results.

I received prescriptions, judgments, proclamations, criticism, and referrals. What I never got was an apology.

A simple example: I asked my doctor to run a test for something specific. He insisted on running a less expensive test. When I got home, I researched and saw that the test he ran was inaccurate for the problem I suspected. It came back negative. I paid out of pocket to have the test run myself and it came back positive. He accepted my test results but never admitted that he should have run the test in the first place. Where’s my apology? I spent my own money, did my own research, and spent many hours fretting over this. He could have just ordered the test, but didn’t.

And then there’s that doctor who did the unnecessary surgery. Where’s my apology from him? That was many years ago, but I’m still resentful that he was so pompous about the whole thing, insisted that it was still informative. I read the records. It gave no new information, but it did succeed in increasing my pain, weakness, and instability in that joint. He never apologized.

I know the medical field is wrought with lawsuits that cost doctors a lot of money and their reputations. So they need to be careful.

But we’re human beings, damn it! Patients are not just puzzles that, when you make a mistake, can be taken apart and put back together again. And if you break a piece, you can’t just throw out the whole box. And yet, that’s often how I feel I’m being treated.

I’m not looking for a 20 minute speech for each and every misstep. But when someone clearly makes a mistake that causes harm to another human being, the appropriate thing is to apologize. This is no less true for doctors. They should learn in medical school that saying, “I’m sorry” for their mistakes isn’t a mistake and it isn’t a weakness. Personally, it would make me respect them a whole lot more.


When healthcare talk is traumatizing

August 24, 2014

I’ve been noticing a disturbing trend and I’m not sure what to do about it. It’s been brewing for a while, but a couple of conversations recently made me realize how problematic it’s become.

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First there was the conversation with a volunteer for one of the gubernatorial candidates. We were in a social situation, but when I asked about her volunteer work, the conversation turned to that. She started talking about his plan to make our state a single-payer healthcare system. I wanted to calmly explain why I didn’t think this would work. I remained mostly (but not entirely) calm on the outside, but on the inside I was boiling, thinking about the many injustices I have faced within the system and how the government certainly didn’t make it any better.

The second conversation was a few hours ago. A half dozen of us were hanging out after lunch, chatting. Then one woman asked us if we’d ever faced discrimination in healthcare due to our sexual orientation (we’re all bisexual.) This isn’t something I’ve experienced, so it was safe territory, right? But just hearing people talk about their experiences was very upsetting to me. It made me think about all of the similar experiences I’d faced that weren’t discriminatory, but were hurtful nonetheless. It made me want to share my own stories that were about healthcare, but that had nothing to do with biphobia. As they talked, I remembered incidents that I’d forgotten about. I thought about recent incidents that were still fresh.

And I got upset.

Again, I stayed mostly (but not entirely) calm on the outside, but inside I was simmering, ready to explode like a volcano. I wanted to yell, to cry, to ask for understanding, to plead for someone to help.

That’s not normal. It’s not healthy. I know it. But I don’t know what to do about it. I saw the warning signs of this many months ago and I starting looking for a therapist who had experience with chronic illness issues. But then I started having health insurance uncertainties, so I decided to hold off until they were settled. Well, they’re finally settled, but now I have a different problem. For personal reasons, I don’t want to see a therapist at one of the major hospitals. I would only see a private practice therapist. And private practice therapists generally don’t take medicare and medicaid for health insurance. And I can’t afford to pay out of pocket for someone.

The truth is, I probably should have been seeing a therapist before now anyway, but I’ve always managed to handle these things on my own. I tried therapy a few times and never got anything out of it. I’m pretty self aware, so I made do. But this is different. I don’t know how to handle the anger, frustration, fear, and desperation I feel whenever anyone talks about doctors, healthcare, or health insurance. Feeling these emotions about my own situation is bad enough, but I shouldn’t be feeling them whenever the topic is broached in a way that has nothing to do with me. I should be able to talk to a friend about their own medical condition without this kind of trigger response.

I just wish I knew how to make that happen.

What about you? Have you felt this way at all? Do you have trouble talking about other people’s medical issues? Do you know of any ways to get inexpensive mental health care in the U.S. or, even better, in Massachusetts? Please comment below and let me know about your experiences.


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