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Am I Crazy?

As a physician, I encounter patients who have complaints that seem to make no sense.  Either there are too many vague symptoms which point to absolutely nothing, or they are complaining about multiple different issues, that it seems they are trying to find something wrong with themselves.Others times, they are struggling to put into words exactly what they are feeling.

A lot of times physicians dismiss them as invalid or crazy. And sometimes they are right. Sometimes patients have mental disease that cause them to have paranoia or hypochondriasis ( Side note: I am not calling these people crazy, I do not refer to anyone with mental illness as crazy).Frequently you are faced with malingerers who are making up symptoms simply for some kind of gain such as  time off work, opioids, or government or disability benefits.

But sometimes we are very wrong.

A few weeks ago, I was having some vague symptoms. I was feeling feverish and had chest heaviness with mild discomfort breathing or taking a deep breath. It wasn’t the typical shortness of breath and chest pain of pleuritis that I’ve had before.I tried explaining my symptoms to the nurse at the doctors office so she could tell the doctor, but struggled to really express how I was feeling.She called back later ( Yes, the doctor never spoke to me himself) and said the doctor says ” Just go to the ER”.

At this point I’m starting to feel like I’m crazy. I know I’m not sick enough to go to ER, but I know I’m not well. I explain what I’m feeling to the people at work, all while looking perfectly healthy, and they are looking at me like I’m crazy. My parents are telling me I’m probably just getting sick and should rest. I go to a cardiologist, have an EKG and echo, and they find nothing. I listen to myself explaining how I feel, and realize as a physician it doesn’t even make sense to me.

Eventually it gets better on its own, and I’m left wondering what was really wrong with me. Perhaps I will never know. But it reminded me of a lesson I learned early on in the course of my disease. Always take everyone seriously. Listen to their complaints carefully and completely. And if I can’t make sense of it, send them to a specialist who might be able to. Never write anyone off as crazy.

Being sick is expensive!

Since moving to Florida, it has been a major change in medical care for me. And to be honest, I am not as happy as my care here as I was in New York. In addition to not liking my new doctor very much ( this is a post in itself), I am having to pay a lot of money out of pocket.

I am all of a sudden paying close to 200 dollars for my infusions, plus a coinsurance. I suppose that’s a rather cheap price to pay considering how much the drug and the infusion costs, but seriously, that’s like a car payment every month. And that’s not my only med. Luckily, I do 90 day mail order on all the others and it saves me a ton.I think about about the fact that I’m not working and how a lot of other people who have chronic disease are not working and wonder ” how can they afford this?”.

I never changed my insurance. I’m still on the COBRA, because it was good insurance that would cover my Benlysta infusions. My husband had checked with insurance companies to get us insured, and when he had looked, he couldn’t find anything that was guaranteed to cover the infusions, so we just stuck with the insurance he had got from his last job. Apparently, I never paid anything before because I didn’t have to pay deductibles because it was the hospital-provided insurance.

This whole experience has brought up so much sadness in me. I’m reminded of my patients who are hard working people, who despite having   ” good” insurance still struggle to pay for expensive prescriptions. I think of my parents and the elderly on Medicare, and my hearts breaks. Older people who should be relaxing now, getting social security, but it’s not enough to cover their million prescriptions, so they still work. I think of those living with lupus and other diseases who can’t work, who already suffer enough, and then have to struggle to find the money to see their doctors. And I remember that awful feeling of prescribing a covered drug because it was cheaper, even though I knew it wasn’t the best choice.

I always like to have some optimism in my posts, so I’ll just hope that maybe things will change soon. Oh and keep me in your prayers please. I start a new job next week.


Part time doctor

So I am back on the hunt for a job, and it’s not been easy. Apparently, no one is wanting to hire a part time doc. I mean I understand that patients want reliability and availability, but I don’t think that’s an impossible thing to accomplish as a part timer.

My last two jobs I was part time, and it worked out well.  The last job I worked three days a week, and rarely had an issue with being able to see all my patients when they needed to be seen. If it was urgent and they couldn’t wait, there was always another doctor to see them in the office, and for quick issues most patients didn’t mind seeing another doctor. It was like seeing a doctor at an urgent care center, but with the benefit of their chart  already being there. And I took phone call, so if they ever had questions I always available to answer, and had their chart on my mobile app. My patients loved me, and always made it a point to only see me.

So, how do you feel about having a part time Doctor? Would it be an issue for you? What would it take for you to be comfortable having a part time Doctor? There being another doc in the office? Having a special email or phone number for the doctor? Feel free to be honest, I really wanna hear your thoughts!


So first let me start with an apology. I know it’s been over a year since I posted, and I’ve been slow about replying to comments and emails, but hopefully that will change!

I hit a rough patch and stopped writing. I had a few flares that came at a time when I was really doing good, and that completely discouraged me. I became depressed and felt so upset about a lupus that I didn’t want to deal with it. I didn’t want to talk about it or read about it or post about it. I felt stupid for writing about it, believing that no one cared about my blog and it wasn’t really helping anyone.

But I’ve had a lot of change in my life and I am feeling more healthy and more optimistic. Thank you for your continued comments and emails that remind me that we all support each other and that there are people out there who understand, that none of us are alone in this battle.

I’ve had a  lot of change in the past few months. My husband finished fellowship and we moved to Florida to be close to family. I have a lot going on and a lot to share! Expect to see some new posts coming your way! And thank you again for your  continued sharing!





So I know it’s been awhile since I’ve posted. My last post got deleted and I got so frustrated I didn’t rewrite it. Anyhow, good news! I am doing well on the Benlysta. My double stranded DNA levels have come down considerably, I’m tapering steroids, and feeling much better. My only issue is fatigue, so today I wanted to talk about fatigue and how I try to manage it.

First is sleep. I make sure to get a good 8-9 hours at night. On days that were particularly busy, I make it a point to get 10. I also noticed going to bed at an earlier time makes me less fatigued than going to bed very late, even if I’ve gotten the same amount of sleep. Naps have become my best friend. Even if it’s just 20 minutes of shut eye, it gives me a little boost to get through the rest of the day.

Exercise also really helps with fatigue. I find on days that I don’t exercise, I feel very lethargic and weak. But there needs to be a balance. If I overdo it I become more fatigued and achey. It’s all about feeling out your body, and learning when to stop.

Doing restful activities like laying in bed reading, watching a movie, or playing a game helps as well. I get to keep my mind active, but Im still in a relaxed state.

Although I cannot admit to having a very healthy diet, I’ve noticed when I’ve eaten healthier, lighter foods it reduces my fatigue as well. Fried stuff and red meats tend to make me feel tired the next day. And alcohol, even one glass, can wipe me out.

In line with eating healthy is drinking enough fluids. Sometimes the fatigue is worsened by dehydration. I personally have a bad habit of not drinking enough water throughout the day, but after I polish off a bottle of H2O, I feel much better.

And lastly prayer and meditation are daily activities I can’t live without. Every morning I spend time with God, reading my devotional and Bible. I start the day out talking to God and praying for energy to get through the day.

So these are the things I do to manage my fatigue, what do you do?

Benlysta Loading Dose

So I’ve completed my loading dose of Benlysta, infusion 2 and 3, and it seems to be going well. I have a lot of energy after my treatments and I don’t think I’ve had any Benlysta side effects. After about a week of my treatment, my energy levels do tend to go down, and I start to feel a bit fatigued. This, I’m not sure is related to the Benlysta though. I have been tapering my prednisone and I definitely feel more symptomatic and tired when I lower my dose.

Speaking of symptoms, I developed some fluid retention due to the prednisone a couple of weeks ago. I gained about 15 pounds of fluid in one week. This actually was pretty bad. My knees and ankles were very swollen and painful and my legs felt very heavy. It literally was like walking with weights on my legs. I think a lot of this can be attributed to my salty diet and four hour car ride back and forth from Maryland for Easter weekend. Because of the long drive, my doctor was also concerned about a blood clot in my legs, and I had to have a vascular ultrasound. Luckily, it was negative, and I got started on a diuretic and have been able to lose the water weight!

Prior to the edema, I had developed an upper respiratory infection/ bronchitis after my first treatment, but in my line of work it is kinda unavoidable. I tried to fight it off for a week on my own. Finally I called my doctor and we decided to start antibiotics and hold my Imuran til I felt better. Symptoms started resolving within a couple days, and now I’m feeling almost back to normal.

I’ve had a little bit of random joint pain here and there, but nothing serious. I believe a lot of the pain I had felt in my ankles and knees was actually due to the water retention, and not due to the lupus. I can usually take a Tylenol and it resolves by the end of the day.

I really can’t complain.My bloodwork has improved, lowered double stranded DNA, and improving complement levels. I have been able to slowly start exercising for the past two weeks. So far, so good on the Benlysta.Next treatment is one month away instead of two weeks, so we will see how I feel in the interim. My trip to a Mexico is right before the next treatment, so I hope I will be feeling well on my trip.

I definitely feel like I am being healed, and am starting to truly understand the meaning of the phrase ” wait patiently on the Lord”. It’s more than just waiting. It’s waiting with complete trust and faith. It’s an incredible growing experience, and despite the ups and downs I have had in the past few months, I feel grateful and hopeful.

First Benlysta Treatment

On Friday, I had my first treatment of Benlysta. I’ll admit I was very apprehensive. I had done a lot of researching of the drug online and read a lot of different reviews and blogs on how different people tolerated the drug. Some people said they instantly felt more energy, others said no change, but the ones that concerned me were the reports of being sick for days with nausea weakness, headaches.

I scheduled my appointment for a Friday with the hopes that if I did end up feeling horrible, I’d still have the weekend to rest and wouldn’t have to miss work. The other thing I was anxious about was driving myself there. I live an hour and half away from my doctors office/ infusion center and my husband had a presentation that morning and would be unable to take me. And to make matters worse, we were expecting a few inches of snow.

Well, I was pleasantly surprised with my experience. When I arrived I was seated in a reclining chair, which had a nearly full recline so I could lay down and sleep. The center had snacks and tea/coffee. They also provided pillows and heated blankets. The nurses were very friendly and made me feel comfortable and put me at ease.

They started with vitals, hooked me up to an IV, drew some blood, and then started running the drug. The medication ran for an hour and was pretty uneventful. I didn’t feel any pain at the IV site, only a little cold. I didn’t experience any side affects. After the drug was done running, they ran normal saline for about an hour and half to monitor me for any reactions. Basically I just slept and watched TV the whole time.

This weekend wasn’t too bad either. I had a lot of energy but made sure not to over exert myself and get some rest.I’ve had a bit of a cough, but nothing major. So, so far, so good.

Despite all my anxiety, everything worked out well for me. I’m really excited to see what’s going to happen with this drug and feel hope that I may go into remission. I have my next infusion next week and we will see how it goes. I will keep you posted. Lots of prayers as I go on this journey!

Winter Break

So I know I haven’t posted in a few months. It got busy with the holidays and then this cold NY winter has made me very unmotivated. But the weather is going to start warming up, and so am I.

This past month I was diagnosed with pleuritis for the second time . I developed shortness of breath and some chest tightness which progressively worsened over a couple weeks. I had to do some tests to rule out any blood clots in my lung and, thankfully none were found.

But now I am back on steroids, and boy do I feel it. Insomnia. Dry mouth.Agitation. Weight gain. And my lovely moon face. Now usually I become pretty discouraged about this, but I am going to try and be optimistic here. I’ve got a vacation planned to go to a Mexico in May, and I am going to try super hard to maintain my weight. I am looking into different diets not only to manage weight but also fluid retention. If you have any suggestions, please feel free to share.

I think my biggest concern is how people will see. Most people who know me, know I love to eat. I worry about them judging me, thinking that my round face and tummy is a product of my lack of self control. I worry about people at work noticing and being curious. Most times I can hide my illness, but right now I can’t . I feel embarrassed, and I worry about having to explain myself, which personally is worse because the last thing I want is for my job to know I have a chronic illness.

I see my doctor tomorrow and we are going to discuss taking Benlysta, the IV infusion drug. I am definitely apprehensive, but after months of worsening bloodwork, and this little flare, I’m thinking maybe it’s time. I will keep you posted and I ask for prayers as I get this figured out. I do believe that a God is the Master Healer, and this is completely in His hands.

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!