Tag Archives: lupus

The Waiting Room

I read a post on Facebook, where someone was complaining that they were in their doctor’s office and the doctor was seven minutes late for her appointment. Hearing these type of things really frustrate me. I’ve been on my fair end of long wait times, and believe me I know it sucks, but I promise you it’s just as bad on the other side. Chances are if the doctor is late for your appointment, then she is running behind in general, which ultimately means she’s going to be staying way late to finish everything up.

I understand as a patient what the waiting room feels like, and I encourage other doctors to understand too. Sitting in a waiting room can be a very anxiety-provoking experience. You’re concerned about what the doctor is going to say about your test results, or that she’s going to be upset at you for not taking your meds for the past couple days because you ran out. You’re scared that you won’t be able to express yourself or have enough time for all your questions. You may also be worried that you have to go pick up the kids, or make it to the bank, or that time is running out on your meter.

And then on top of all that stress you are sick. Your exhausted and your body hurts. The only thing you want to be doing is laying in bed, and truthfully it’s what your body should be doing. And maybe you’re hungry. God knows what happens to me when I’m “hangry”. I get dizzy, and my head hurts, and I turn into Oscar the Grouch. You need to be home, but instead you are in the office waiting for what feels like hours.

Doctors don’t like keeping patients waiting, but it happens. Maybe the patient before you came in late, or perhaps someone walked in because they were sick. Or maybe someone had a fifteen minute appointment, but it ran a little long because they had a lot of issues. Sometimes it’s a scheduling issue. Someone from another department accidentally double booked, or even worse, the administration requires time slots to be double-booked. Other times we have a serious emergency where we have a patient who needs to be transferred to the ER. We’ll have to fill out transfer paperwork, update the medication and medical history lists, provide emergent treatment, and keep an eye on the patient til EMS arrives. Sometimes it’s a phone call from another doctor or family member about a patient in the hospital. I remember being locked up in my office on a twenty minute phone call like this, and when I came in to see my next patient, she accused me of sitting around on my computer in my office doing nothing.

For my patient readers, I ask you to be understanding with your doctors. It’s not an easy job, and the truth is when you are the patient who has the emergency or special situation we will give you all the time you need. And for my physician readers, we have to respect our patient’s time as well, keep them in the loop so they don’t feel forgotten,and be considerate of what they are feeling as they wait.

Adaptability

Yesterday I went out to a Lupus fundraising event at a restaurant in my town. The money collected went towards supporting research at a local academic hospital. It was so amazing to see all the support from the community. The event was hosted  by a young woman with lupus and her boyfriend who was part owner of the restaurant.  She shared her story with me about how she used to be a professional dancer, and loved going on auditions until lupus took that away from her. She now works full time as a make-up artist.

It inspires me to see someone who has lost what they loved, but didn’t let it keep them down. Instead she found something new to love. Sometimes it is all to easy to give up completely because we can no longer do what we love or are familiar and comfortable with. It’s easy to become close minded and think “Well, now, I can’t do anything.” I’ve often wondered what I would do if I couldn’t practice medicine anymore. I’m really not qualified to do anything else. But maybe I could teach. Maybe I could do research. Maybe I could write a book.

I think in order to not just survive, and truly live, we need to be adaptable. We really do need to think outside the box. We need to reach beyond ourselves, and explore all that we can be. We can develop our other talents, or learn new skills. I challenge every one of you to discover something new about yourself and use it to do something great!

My Story: Part 4: Love

My boyfriend and I had only been dating for a couple months when I had been diagnosed. He also was a resident so he had an idea of what the disease meant. Neither of us really knew what a life with lupus meant, but we knew it would not be an easy one.

I remember one day driving with him to a wedding a few hours away.The conversation of having children came up. If I had a kidney biopsy, and things looked pretty bad, I may have to be on medication that could possibly prevent me from having children. With the anti-phospholipid antibodies, even if I could get pregnant I may not be able to carry a pregnancy. And then there was the concern for my own health, having bad flares during pregnancy. We talked about freezing eggs, in vitro, surrogates, and adoption. Pretty heavy stuff for a new relationship, but I wanted to make sure we were both on the same page. I didn’t want to get too attached, only to have him realize it was too much to handle and leave. He had told me before that he really wanted to have children, and that passing on genes was the purpose of life. I told him then I would understand if he wanted to end  the relationship.

He did the opposite. Instead of running away, he moved in with me four months after we had started dating. I was having trouble with some of my daily duties. After work, in the evenings, was the worst time for me. I’d come home so exhausted, I couldn’t prepare food for myself. Forget about cleaning. Some days my fingers hurt so bad I couldn’t pick up a dish or brush my hair. Other times, I couldn’t get on and off the toilet, or out of bed without assistance. He made a bold move moving in with me, knowing he’d have to care for me. But that’s how I knew he was a keeper.

The next few months were tough for me, and I’m sure they were rough for him too. I know there were times when he’d considered giving up, and moving on. But he stuck by me, and even married me three years later.

I know things don’t always work out that way, but I do believe in a God that provides. I believe things happen for a reason, and I believe whatever happens in our life, we should never give up. Not on life, or love, or ourselves. We always have to hope.

Lupus Awareness Month!

May is Lupus Awareness Month, and May 10th is World Lupus Day!  This month I’d like to feature extraordinary people in our lupus community who continue to fight and raise awareness about this mysterious disease. If you would like to have your story posted on this blog, please send me a message.

This weekend I will be attending a lupus awareness fundraising event. It’s exciting to have an event in my small community town. I am inviting a few friends who know I have lupus, but  despite being a doctor,  don’t really  know what lupus is. This will be a great opportunity to share, and I encourage all of my lupus family to find an event this month, invite their loved ones, support research, raise awareness, and just meet other cool people battling with the disease.

If you would like more information about events in your area, I would check out The Lupus Foundation of America at www.lupus.org. They have several chapters in different states. Let’s get active about raising awareness!

 

My Story: Part 3- Residency Continued

Although I was glad to be able to finish residency, it was not easy. There were days when the pain in my knees would be so bad I would be limping from room to room. The fatigue had gotten better with the high dose of steroids sending me into a state of jittery high, but after I had spent all my energy, I would crash hard.

I remember one overnight call, where it was an especially busy night. I was stuck in the ER doing admissions. The floors were also busy with critical patients, and nonstop codes. Perhaps it was a full moon. I kept finishing one task, hoping to be able to sneak off to the call room , eat something, and take my meds, but only to have another urgent task awaiting me. I watched the clock, 10 o’clock, 11:30, midnight.

I eventually caught fifteen minutes to eat, but after that it was back to the grind. The work seemed endless, my body ached, and I could barely keep my eyes open.  I remember finishing up my admissions, and as I was walking out the ER at 4 AM, the ER attending tells me he’ll have another patient ready for admission in another hour. I went to lay down for the hour, and prayed that would be the last one before sign out.

There was also the time when my left eye vision became blurry. I was in the middle of interviewing a patient in the ER, and I didn’t want the patient to feel I was incompetent, so I finished the interview, squinting to write my notes. Twenty minutes later, after I finished the admission, I ran to the clinic to speak with my attending. She didn’t know what was wrong, and told me to call my rheumatologist.

I went to the ER at a different hospital, and after a neurology consult and MRI, it was determined that I was having migraine auras. It turns out the constant lack of sleep and stress was causing me to have these painless migraines. I left grateful that it wasn’t any serious problems with the blood vessels in my eyes, which is what my rheumatologist had feared.

There were several other incidents here and there, and sometimes I had to be seen in the ER I worked at. Many times, I’d lay in that ER bed, embarrassed as my colleagues and other attendings would walk past, catch a glimpse of me in a hospital gown, then ask what was wrong. I never looked sick, and I always feared they would think I was just trying to get out of work.

It was a tough journey, but I made it through with lots of prayers and the support of loved ones.

Patient Satisfaction

I read an article titled “Patient Satisfaction is Underrated” on the popular medical forum KevinMD.com. It was written by a medical student who was trying to explain to physicians that it is possible to keep patients happy, without caving in to unrealistic or inappropriate demands. Previous to this, an article was written titled “Patient Satisfaction is Overrated”, which explained that patient satisfaction doesn’t produce better outcomes for patients, and that doctors are under a lot of pressure to score high on patient satisfaction surveys, or fear decreased reimbursements.

There were a lot of mixed emotions in the comments section. A lot of disgruntled replies from doctor who have had their fair share of abuse from patients, administrators, and policy makers. Then there were the doctors who were still holding on to idealistic beliefs. Some fell in between, wanting to have those ideals but realizing it wasn’t always practical.

I think maybe I walk in the middle. From a physicians perspective, I cannot deny that constant pressure from my administrators, patients trying to take advantage of me, and simply being overworked, has not made me a little bitter sometimes. But the patient within me still feels like doctors should still believe that providing patient satisfaction is still important and attainable.

As the former article stated, communication is the key. As physicians, we need to be willing to communicate, and not become jaded by prior experiences. We need to find our passions again, remember why we went into medicine, and find happiness in the good work we do, despite what is happening around us. I feel like happy doctors make happy patients.

As patients, we also have a duty to do. We need to see our doctors as human beings and learn how to trust them. We need to recognize that our doctors are not just two letters behind a name, or a signature on a piece of paper. Our doctors are resources with years of training and knowledge who are ready and willing to help us. We have to stop telling our doctors what we WANT because Google said so, and trust the judgement of our doctors to do what we NEED.

I believe we can change the atmosphere between doctors and patients, so that both patients and doctors are satisfied, but we have to be willing to see each other’s side and work together.

My Story:Part 3- Residency

During this initial diagnosis period, I hadn’t taken any time off. I was lucky that my Rheumatologist had evening office hours. But now the time came to tell my supervisors and colleagues. I expected to be met with sympathy and support, but instead I received a jumble of mixed emotions.

During residency training, you work so closely with the other residents. You spend countless hours in the day with the same people- working as a team, eating most of your meals together, and sleeping in the same call room. Even when you’re not working, you’re spending time together, because after alienating all your other friends with your crazy work schedule, these people are the only friends you have. You go through weddings, births, divorces, deaths in the family, licensing board failures, career change considerations, and suicide contemplations together. It’s being a part of a family.

But some of my family let me down. At the end of the year, I had considered becoming co-chiefs with another resident for the third year. It’s a lot of responsibility with planning schedules and arranging lectures, but it meant no on-call and it looked awesome on resumes. When I realized I would not be able to handle the added stress, I stepped away from the idea. The new chief, who had been one of my best friends in the residency, turned against me. She went to the Director of Medical Education, and stated that I should to take a medical leave of absence because I would become a liability. She explained that I was not capable of running, and climbing stairs fast enough to make it to the codes. Apparently, you need to be an athlete to practice medicine. Also, what if I had an emergency, or needed to leave for an appointment or test? Who would cover me? This coming from the woman I drove to work and covered for multiple times when she left early. I suppose her points were somewhat valid, but she lacked any empathy.

Luckily, the director was far more kind. He allowed me to continue working so I wouldn’t fall behind in my training. He had me placed on an easier rotation in the clinic instead of the hospital floors since I had already met my medical wards requirements. There was only one month left in second year, and he asked my fellow second year residents if they each would volunteer to cover one overnight call for me. They all obliged with the exception of the soon-to-be chief. Since chiefs don’t take call, I’d never be able to repay her. So, I only had one more overnight call in the second year, and after that I’d only have one call a month.

Although, this was a trying experience, it taught me a valuable lesson on trust and being too open. I have learned to keep my disease a secret from my employers to avoid discrimination. I hope one day that can change.

Job Hunting Tips

While we are the topic of work, I’d like to take a break from My Story, and talk about job hunting. I am moving in a couple months and I’m in the process of looking for a job. For those of us who are able to work, here are a few things to consider.

1. Flexibility- This is huge. As a patient with lupus, you need something that allows you to be able to take time for doctor’s visits and tests, as well as sick days.

2. Low stress- One of the causes of lupus flares is stress. You want to work in a drama free environment where you can work at your own pace.

3. Ease of work- You want to choose a job where you aren’t standing for hours of having to lift or push heavy things.

4. Good coverage- Emergencies happen. It helps to work in a place where you aren’t ‘t the only person who can do your work. Employers are less likely to be upset if you call out, if there is someone who can cover for you. Also if you have to be out of work for a longer amount of time, they are less likely to replace you because they have someone there to do your job, and may just hire temporary help if needed.

5. Health insurance- Health insurance is expensive, and as patients with chronic illness, we need health insurance. Frequent doctor’s visits, lab work, and costly medications are nearly impossible to pay out of pockets. If I had choose between a good health insurance plan, and a higher paying job, I would choose insurance.

My Story: Part 2- Bad News

I was in the Family Health Center when the call came in. I wasn’t with a patient at the moment, so I snuck outside into the warm summer air in the front of the building. My facial swelling had improved on the steroids and I was feeling better, so I didn’t think I had anything to worry about.

I heard it in his voice. Something was wrong. He told me that my bloodwork came back and it looked like I may have lupus or some other rheumatologic disease. He said I’d need further evaluation and gave me the number of a good rheumatologist he knew.  He was apologetic for the bad news but wished me good luck.

I ran back inside speechless, guarding the center’s fax machine as I waited for the papers that would deliver my fate.  I snatched up the warm papers as they flew out of the machine. Looking at the words and numbers on the page, nothing made sense to me. What are speckled antibodies? What I did understand  was the protein in my urine, and that made me nervous. I went to consult with my supervising physician, hoping for an explanation and reassurance, but none came. She told me solemnly ” I’m not sure what this means, but it doesn’t look good”.

I met with my rheumatologist the next week. I liked her instantly. She had a genuine and caring demeanor, and seemed very knowledgeable and thorough.  She asked me every question in the book, and examined me completely, looking inside my mouth, searching my skin for rashes, testing every joint and reflex, and combing her fingers through my hair.She said the labwork pointed to lupus, but she needed to do some confirmatory tests. She also said she needed to check a few other labs to rule out any other medical conditions. People with autoimmune diseases tend to get other autoimmune diseases.

The follow-up appointment came and I was beyond anxious. I had lupus and anti-phospholipid antibodies. She said my kidneys looked okay, but we would have to monitor them, and we may need to do a  kidney biopsy. We discussed my ability to conceive and carry a baby due to my anti-phospholipid antibodies which can cause blood clots. She informed me of the worrisome symptoms to look out for, and answered every single one of anxiety-laden questions. She was patient and devised a medical treatment plan for me, explaining that we may need to make changes until I am stable. But most importantly, she told me she was there for me and that we would get through this together. I may have had bad news, but I also had hope.

 

My Story: Part 1- Signs and Symptoms

One of the most common things I hear in the lupus community is that it took a very long time to reach a diagnosis. Patients with lupus have very vague symptoms which can also mimic other diseases. If you’ve ever watched the show “House, M.D.”, you know lupus is almost always on the differential. We suffer through multiple tests and treatments searching for an answer. You would think as a doctor, someone with experience diagnosing patients, that I would have been able to interpret my own signs and symptoms. But, alas, I could not.

My symptoms began most likely a year or so before I was officially diagnosed. I say most likely, because I am not sure. The symptoms I had were mild and transient so I never paid much attention to them. Things didn’t start to become noticeable until my second year of residency. It had started out with knee pain. The pain was quite strong, but I was still able to walk if I wore a soft knee brace and popped a couple Aleves. I consulted with the orthopedic residents, and although they could feel a little crepitus (crackling), they couldn’t find anything specific. They said maybe I hurt myself at the gym, and we left it at that.

The next thing I started to notice was the pain in both my wrists. Being a physician, I was constantly writing or typing notes and orders, so I figured I had carpel tunnel syndrome. I bought a couple wrist braces, more NSAIDs and called it a day. I also was very fatigued, but doesn’t every resident feel that way? We run around all day, up and down stairs, pushing patient’s beds, working overnight and twenty-four hour shifts, and then coming home to study or work on power point presentations. I mean just writing about it makes me tired.

And then it was the hair loss, but I didn’t actually pick up on it. My landlady had hired a cleaning lady, and when the cleaning lady quit, she would come down and clean my basement apartment. She would get upset about the amount of hair on the floor and clogging the shower. But doesn’t stress cause your hair to fall out? And residency was definitely stressful.

Then things really started to spin out of control. On my vacation to California, I started to feel a lot more joint pain. It was in my knee, and my wrists, and now in my toes. I could hardly walk when we were sightseeing, holding back the tour groups we were in. I told myself I would get it checked out when I got back, but I knew I’d be too busy to.

A week after I got back, I started developing swelling in my face. I thought I was allergic to my boyfriend’s cat. I took Benadryl but it continued to get worse. I was too embarrassed to go to work looking like the Marshmallow Man. My vanity finally brought me to the doctor’s office.

My boyfriend took the day off and drove me to the office, since I could barely see through my puffy cheeks. The doctor took some urine and blood, and started me on prednisone for my “allergic reaction”.  I didn’t know it then, but my life was about to change completely.