Taking your own life

I’ve been getting a lot of posts in my Facebook feed about Brittany Maynard. For those who have seen the news, she is a 29 y/o female who is dying of brain cancer. She has decided to take medicine to end her life because she didn’t want to suffer or have her family watch her suffer.

Now I don’t want to judge anyone, because it is not my place, but I wanted to share my feelings. And I’d like to know yours.

I’ve struggled with hopelessness before. A few times actually. Once in college when I was under a lot of pressure to be perfect, to please my parents, to get into med school, while dealing with issues of very low self esteem and low self worth. Then my boyfriend cheated on me, the only person who knew who I really was and saw my worth. I felt like a nobody again.

Again in medical school, I felt that hopelessness again. Everything was so crazy. I didn’t want to be a doctor, but knew I’d come so far that I couldn’t quit. I couldn’t disappoint my family, and I had 250 grand worth of debt. I was trapped in a situation I couldn’t control.On top of that, I suffered from a very traumatic experience caused by someone I trusted.

Then once again after being diagnosed with lupus, I considered once again that life was not worth living. I believed I wouldn’t be able to work or have children. I thought I’d always be sick and in pain. I thought for sure my boyfriend would leave me. My future looked bleak.

Each time I considered ending it all. But I got through. And I am happy. Not completely healthy, but happy.

Now I am not comparing myself to Brittany or the trial she is going through, but I believe in hope. A hope that I have in Christ. A hope that comforts me through a tough time. A hope of knowing that God always provides. A hope that reminds me to rejoice through trials, because I know it is making me a stronger and better person.

My heart goes out to her and her family, as does my prayers. I’ve shared my thoughts, please share yours.

Telephone Encounters

One of the things that happens in my office a lot is patients not wanting to come in for follow up visits.They’ve just gotten bloodwork and they want me to give them the test results over the phone, or they need a new refill on a prescription and want me to call it in to the pharmacy, but they haven’t been seen for several months. Or sometimes they have a seemingly minor health issue they want me to diagnose them over the phone. There are few things wrong with this situation.

1) I am not comfortable with diagnosing someone without really talking to them and taking an appropriate history and examining them. I can’t do this in a quick phone call. It’s not worth the risk for my patient or liability for me.

2) A lot of times further work up is needed. For instance, maybe I’d like to do some lab work to diagnose or make sure the medication you are taking is actually working and not causing any side affects. Sometimes abnormal labs warrant further testing or additional referrals.

3) I may need to prescribe something, and it’s important to review the medications that a patient is taking beforehand. Even if it is just a refill, I don’t know what other meds you’ve been prescribed since the last visit. I also need to make sure the medication isn’t causing any side effects. I usually give a three month supply on meds and bring a patient in for follow just before the meds run out.

4) Giving information over the phone sometimes causes miscommunication. I have a better chance of knowing my patient heard and understood everything I said if they are sitting in front of me.

5) It’s unfair to my other patients who are at the office.These non-urgent phone calls can take up time when I have other patients who are waiting to see me.

6) Visits are a great time to make sure patients are up-to-date on vaccinations and cancer and health screening, so when you don’t come in we miss important preventive measures.

7)And, lastly, office visits are how I earn a living. I don’t get paid for the time I spend with a patient on the phone, or charting, or filling out paperwork. If I don’t see patients, I simply don’t get paid.

I know it can feel inconvenient to go in to the doctor, especially when the weather is bad, or the drive is long. But it’s worth it because it’s for my health. It’s always better to go see the doc!

Flu shots!

Flu season has started and it is time to get your flu shot! Now I’m a total baby when it comes to needles, but I got mine last week. I firmly believe in the flu shot, especially for people who have weak immune systems and need the extra protection.

A lot of people don’t realize the difference between a common cold/ upper respiratory infection and influenza.The flu virus is actually pretty serious and can be life threatening in immunosuppressed patients. The symptoms are similar to a common cold, such as body aches, cough, fever, runny nose, but more intense. You can also develop nausea, vomiting, and diarrhea which can lead to dehydration. The flu can last longer, and keep you in bed for weeks.

The concern that most people have about taking the flu vaccine is that it causes them to get sick. Those flu-like symptoms after getting the shot is actually when your body is making antibodies to the influenza virus and usually is short lived. Sometimes people get a slight skin reaction at the site of injection or feel some pain and heaviness in the arm. A Tylenol usually works for any pain or fever, and you should always ask for your shot to be given in your nondominant arm. Overall the benefit of taking the flu vaccine outweighs the risk.

For patients with lupus, it is important to make sure you get the injection of the flu vaccine, and not the intranasal. Flumist intranasal is a live virus and shouldn’t be given to anyone who is immunosuppressed, lives with someone immunosuppressed, or has lupus.

You should always talk to your doctor first, and the vaccine is not recommended for pregnant women, those who have had a prior allergic reaction, or have egg allergies.

Take control of your health, and get the flu shot! I don’t want anything to keep me from enjoying my favorite time of the year!

Just Because You Can…..

Doesn’t mean you should.

As a family practitioner, my scope of practice is pretty broad. I can deliver babies, do GYN procedures, and even perform minor surgery. Technically my license states that I can practice medicine and surgery in the state of New York. Perhaps, I could do an appendectomy? I’ve heard of country doctors having to do these kind of surgical procedures because the nearest hospitals is miles away. But I would never do anything like that because I’m not comfortable and I live in a big city.

I feel in life, especially in living with lupus, I am faced with the dilemma of deciding if I should do something just because I can. I can go out late for drinks and dancing, but am I willing to be stuck in bed achy and exhausted the next day?

I can work full time, but would it be at the cost of my health and sanity? I remember when I did work full time. It was so stressful, I was constantly exhausted, and every day felt like a battle. I was constantly agitated and always had some kind of lupus symptom. I made a lot more money, but was it really worth it?

I can go on a strenuous hike or skiing while on vacation, but am I going to be in pain for the rest of the week. Will it keep me from enjoying the rest of my trip?

I guess my issue is that I hate limiting myself. I hate the idea of lupus holding me back. I like to believe that I can do anything I set my mind to, and encourage others to do the same.

But sometimes I just have to be realistic. I am not limited in what I can do. I just realize that maybe I don’t need to do everything. It’s my choice, and I’m okay with that.

Unnecessary Tests

So something a lot of patients ask me is “Is this test really necessary?” The majority of the times a test is ordered it is necessary, but there are times when they are not. Let me define what I mean by necessary and unnecessary. Necessary, to me, is any test that will rule in, rule out, or confirm a diagnosis. Necessary tests guide treatment, letting the doctor know the next step in treatment, how to alter treatment, or when to stop.

Unecessary tests are tests that don’t really give me any new information that would help determine a diagnosis or change my treatment plan. Here are some of the reasons these tests are ordered.

1) Patient demands it. There are times when I know the XRay isn’t going to show anything because what they have is not something that can be visualized on XRay, but despite my best efforts to explain reasoning and the risk of radiation, they still demand it. It’s horribly uncomfortable to argue with a patient, and when they don’t get what they want, they just go down the block to the next doc. The practice loses business, and the doctor gets in trouble with the administration or suffers low survey scores which can lower reimbursements.

2) To cover our butts. Sometimes we simply have to do it to ” just make sure” and protect ourselves. And we also want to make sure we are doing everything we can for our patients. Better to be safe than sorry.

3) For documentation purposes. Sometimes insurance companies need proof in the form of lab/ imaging results that the patient indeed needs this treatment. Also, sometimes insurance companies won’t cover a certain test or referral that I deem necessary until another test is done beforehand.

4) And, I’m embarrassed to say it, but  some doctors do it for money. Not all doctors do this or want to do this but sometimes we are forced to do so. The last company I worked for wanted me to order sleep studies and ultrasounds on every patient as they were procedures that were done in house and could be billed. My constant refusal caused me a lot of humiliation and reprimanding. Other doctors do them to make up the difference in what they are being reimbursed by insurance. I am not justifying this behavior in any way and I believe that it is a very small percentage of doctors that do this.

Hope  this sheds a little light into the issue of unnecessary testing.

“Work is killing me.”

So I know it’s been awhile since I’ve posted. The other doctor in my office was out of town so I was covering for him and then I got sick last week and am still feeling pretty crappy.The weather went from a blazing eighty five degrees to a rainy, dreary seventy in just a day and I had patients coming in with coughs and colds and sore throats for a week.

A few days later I started feeling chills and general fatigue. I figured it was a viral upper respiratory infection and started taking vitamin C. I had an appointment with my rheumatologist, who ended up doing a throat culture and nasal swab. I didn’t think anything would come up positive and figured I’d be feeling better by the weekend.

Over the past weekend, I developed a horrible cough, and it got me thinking. The purpose of my lupus treatment is immunosuppression. I take Imuran, and my last white blood cell count was about 2. This makes me really susceptible to catching some nasty bug. I should be avoiding sick people but instead I’m surrounded by them all day. They cough and sneeze all over me. I look inside their mouths and noses while taking swabs and cultures.

I remember when I worked in the hospital during residency. Any time there was a suspected case of tuberculosis or meningitis in the ER, I was warned to steer clear. I couldn’t even go into the ER to see my patients who were there for noninfectious illness, because everyone who went into the ER was at risk of contracting the highly- contagious disease and had to be given prophylactic antibiotics.

I work in an outpatient office now, so the likelihood of having an extremely sick patient is not as common, but it’s still a risk. I could never work in a hospital again.I could wear a mask at work, but that would make my patients uncomfortable, and make my staff suspicious. After getting sick this last time, it made me wonder how at risk I am putting myself everyday.

My throat cultures came back positive for bacteria, most likely strep. I’ve started antibiotics, but I’ve been so short of breath that my doctor ordered a chest X-ray to rule out pneumonia. I should get my results back today, which hopefully will be negative. I’m still going to work this week because I don’t get any sick leave (doctors aren’t supposed to get sick) and I shouldn’t be contagious anymore. I’m exhausted and weak from coughing all night, but I still have to keep going.

I’m optimistic that I will get better soon, and I am going to take better precautions to prevent getting sick again but this gives new meaning to the phrase “Work is killing me.”

The Day of the Visit

We discussed how to be prepared for your doctor’s visit in my last post. Today I will discuss what to do on the day of.

First thing is try to be 15-20 mins early. They may need you to fill out new paperwork, or re-run insurance. I know every time I see my Rheumatologist I fill out a health questionnaire.

In the waiting room, find a way to pass the time. Bring a book or read a magazine, or what I like to do, play a game on the phone. I find doing this not only makes the wait time seem shorter but also helps decrease any anxiety I may be feeling about the appointment.

While your waiting in the exam room, take a minute to relax and clear your mind of other distractions. I know sometimes I go in and I am worried about something and work or home. I can’t focus on what my doctor is saying when I’ve got other things on my mind. Get your paperwork and notes ready. Think about what you want to say.

And most importantly, turn the phone on silent and put it away. As a patient and doctor, I find it to be a huge distraction. I will ask something and the phone rings and both of us I lose our train of thought. Plus, it’s simply rude. It gives the doctor the impression you don’t care when you are texting/checking emails/ playing games during your visit. I find they are not paying attention, and I have to repeat myself multiple times.Sometimes I’ve had patients answer their phone and start having full conversations while I’m waiting to finish interviewing/examining them. This is a patient’s special time with a doctor and it should be dedicated solely to determining the best plan of care.

During the visit, let the doctor guide the visit. When I see my doctor, I have my own questions and concerns I want to discuss but I usually wait til the end. I let her ask her questions first, because I know she is trained to gather the important information necessary to coming up with a good assessment and gameplan. Usually throughout the course of her interviewing me, I get my questions answered anyway.

Be honest with your doctor. I’ve had a lot of patients try to hide information because it’s embarrassing, or illegal, or simply cause they did’t feel it was important. Doctors keep everything confidential, and are not there to judge you personally. The more information we have, the more we can help.

Take notes. Write down things so you don’t forget once you get home. I don’t know about you, but somedays it’s a lot of info all at once. Also ask about getting any test result reports you need for your other docs.

Don’t be afraid to voice your questions or concerns. You are your best advocate. Also don’t be afraid to ask for something to be repeated or explained again. Sometimes us doctors talk to fast or accidentally use language that others are not familiar with. I usually ask my patients to repeat the plan back to me, to make sure they really understood what I said. I know I’ve misunderstood what my doctor has said to me a couple times.

I really believe that these doctors visits are really important. With the confusion of this disease, I feel like my doctor and the time I spend with her is what really gets me through. I know a lot of people hate going to the doctor, but I actually look forward to it. All in all, these tips should be useful in making your appointment go smoother.

Before the Visit

When I went to facilitate the lupus support group meeting, I gave a talk on how to make your office visit go smoother.  I gave several tips on how to be prepared before and during the visit, so that your time with the doctor is used most efficiently. I know it’s frustrating sometimes to only have fifteen minutes, and then at the end of it feel unsatisfied, because you didn’t get to ask all your questions and voice all your concerns. The participants found the topic useful, so I will share my advice with you over the next couple posts.

1) Choose a doctor you can be comfortable with. There are a lot of factors in choosing your doctor.Do you feel more comfortable with a male or female? Is there a culture or language barrier? Do you prefer someone more straight to the point, or someone you can talk casually to? Deciding upon a doctor is one of the most important parts in your lupus journey. They will be your guide and you need to be able to trust them and feel comfortable telling them personal information. If you’re not comfortable with your doctor, look into switching, maybe another doctor in the practice or a new office.

2) Give yourself time. Try not to book appointments within 3-4 hours of another appointment/meeting/errand. You never know if the doctor is running behind, or if there is an emergency, or if you will have to do tests or bloodwork after the appointment. I always advise one appointment per morning or afternoon session. I’ve had situations where my patients were rushing to pick up kids or go see another doctor and feeling rushed hindered me from being as thorough as I’d like, and the patient was so worried about the time that they couldn’t completely focus. Also, if you feel like you are going to have a lot of issues to discuss, ask for a longer appointment time, so that you have sufficient scheduled time. If your requiring some kind of form to be filled out, make sure your appointment is at least 2 weeks before the forms deadline.

3) Be prepared.
A) Write down any issues you had, preferably when they happen. Note what, where, when, surrounding circumstance, duration, intensity, other symptoms and how it went away. I know personally that sometimes I’ll have some joint pain or another symptom, but by the time I have my appointment I’ve forgotten about it so I don’t mention it to my doc. If I make not of it as it is happening, I can give my doctor an accurate description.
B) Write down all your meds. Read off the bottles and write the name, dose, and how often you take it. Write down not only the meds that doctor writes for you but all the meds, including the ones from the specialist. Also write down any supplements you may be taking. If it’s too hard to write, bring in all the bottles for review.
C) Bring in any reports or consults. Ask for copy of labs or radiology reports when you are at your other docs. Sometimes the info doesn’t move between doctors as quickly as we like. Also take notes at the appointments and write down any new diagnoses/treatments.

Hope this helps.In my next post, I will talk about ways to make the appointment day easier. It’s important to make the most of your doctor’s appointment.

Lupus meetings

A while back I had written about my first experience at a lupus meeting. At that time four years ago, I felt very disheartened and made a decision to never go to another lupus meeting. I wasn’t ready to face my disease and the changes that were about to take place in my life. I was scared and in complete denial. I felt like I was nothing like those sick people because in my mind, despite the pain and fatigue, I was still healthy.

It took about two years before I decided it was time to go to another lupus meeting. This wasn’t so much an educational or support group type of meeting, but a SLE Lupus Foundation  Young Leaders Board meeting for people to get involved with raising awareness and fundraising. I thought it would be a great opportunity to take the tragedy in my life and turn it into something positive. It was really exciting to see young women living with lupus like myself who were happy and able to maintain professional jobs and still have social lives. I wanted to be like them. I left the meeting wanting to come back, but with the demands of my job and the inconvenience of getting into the city, I never returned.

Then six months ago, I decided that since I was working part time, it would be a good time to get involved again. I emailed a contact that I had met at the Lupus Foundation meeting, and she hooked me up with someone from one of the lupus supports groups who invited me to come and facilitate a meeting and tell about my experience as a physician and lupus patient.

I was nervous about speaking in front of a group, wondering if my material would be relevant and relatable. It was a very small but diverse group of people, young and old, male and female, and family members who came to support. I immediately felt comfortable with these strangers. Everyone there was welcoming and supportive and eager to hear what I had to share. They asked questions and offered encouragement, and just gave me that general feeling of understanding and not being alone.

That lupus support group was one of the most positive experiences I’ve had and actually inspired me to start this blog. I definitely encourage everyone to go and be part of their local lupus family. Now that I’ve gotten settled in my new home, I look forward to getting involved with my local lupus community.

First day!

So yesterday I had my first day at the new job. It was a slow day, but still quite exhausting. Basically,  it was about getting all my paperwork in order and getting acquainted with the staff and environment. I only saw one patient, but it took awhile to finish because I was still trying to figure out the electronic medical record system.Despite the slow day, I still left work drained.

I had become comfortable with not working. My body was used to sleeping in, and being able to nap whenever I didn’t feel well. I had enough time to take care of my chores and errands and plenty of time for exercise and my other hobbies. I never really needed to plan anything out, since I just did whatever I needed to whenever I wanted.

After only one day of work, I’ve realized I am going to have to make some adjustments in my lifestyle to be able to maintain my health and minimize stress. First, I’m going to have to go to bed earlier, which means no more late night TV. I am also going to pay more attention to my diet and eat foods that will give me more energy during the day. I will plan out my chores and errands better, so that I can do little things on the days I work, and save bigger projects for my days off. I’ll need to switch up my exercise routines so that they days I work, I do a little less, and make up for it on my off day. I’ll also have to accept there’ll be days when I just won’t be able to work out at all.

I’m happy to be working again and know it will take time to get in my groove. I’ve never been one for change, but I’ve learned that sometimes it’s not such bad thing and with every change in my life comes new experiences. I look forward to my new job and hope to have new stories to share with you!