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!

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 ┬ásome 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.”