Tag Archives: lupus

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.

Hobbies

I believe whole-heartedly that people should have hobbies. For me it usually changes every couple of months. Sometimes I’m interested in scrap booking, other times it’s painting. I’ve gotten into embroidery and sewing, and even knitting. When I’m feeling really inspired, I take to writing poetry and songs. This season it’s gardening.

I’ve started a little herb garden in pots in my backyard. I’m growing cilantro, thyme, parsley, basil, dill, and oregano, but my favorite is the red chili pepper plant. It’s exciting to watch how they grow everyday. And the best part is I get to use fresh herbs in my cooking.

Hobbies help keep us engaged and motivated. I have not started my new job yet, and being at home alone becomes very lonely and depressing. Sure I have tons of housework and paperwork to keep me busy, but there’s nothing to give me a real sense of accomplishment. I’ve noticed that when I’m having a flare, and I feel like I can’t do anything, I feel the same.

For a lot of us living with lupus, we can’t always work. But that doesn’t mean we can’t do anything. We can still keep our minds active even when our bodies are out of commission. I find hobbies that allow creativity or involve helping other people give me the most pleasure and satisfaction. There are a lot of low energy hobbies that you can do such as reading or drawing. If you don’t have a hobby, I encourage you to find a passion or try something new and run with it.

So, what are your favorite hobbies?

Tapering steroids

When I was first diagnosed with lupus, I was started on high doses of prednisone. My doctor also started me on Plaquenil, and the plan was to taper me off the steroids over the next few months once the Plaquenil started to do it’s magic. After my doctor was satisfied with my lab tests and my symptom control, she started lowering my steroids. She would decrease by five milligrams every couple weeks. Every time I would have a decrease, I would develop some achiness and mild joint pain for a couple days but it would resolve quickly. After about six to nine months, I was able to get off the steroids. But within two weeks of stopping I was having symptoms of joint pain and fatigue. I didn’t tell my doctor right away. I wanted to see if the symptoms would go away because I didn’t want to go on steroids again. At that point I had gained some weight from the prednisone and I was just ready to be done. Things started to get worse, and I developed really horrible joint pain. I ended up spending a couple nights in the hospital where my bloodwork showed high lupus activity. So once again it was on high dose steroids with a raise in my Plaquenil. I stayed on that for a while, and as I was getting closer to finishing my course I started to develop symptoms again. I was maybe at about two milligrams at that time, but that’s when my doctor decided we needed to taper slower. So then instead of tapering to one milligram daily, we alternated two milligrams one day, one the next. Then down to one daily, and then every other day, and finally done. For a month I felt great, but then I started to develop pleuritis (inflammation of the lining of the lung). I didn’t want to go back on steroids again, as it had been nearly three years on steroids. My doctor was also hesitant to start me on steroids again, as she was worried about the affects of prednisone on my bones. So instead of steroids, we started Indomethacin instead. I was on that for a month and my pleuritic symptoms were resolving but the side affects were awful. I would take one pill every twelve hours, and after I would take the morning dose I was a mess at work- dizzy and sleepy and just overall foggy. I had to try really hard to focus. Finally my doctor realized this just wasn’t going to work and that I’d need to go back on steroids as well as another maintenance drug. I was going on vacation with my family in a few weeks so she decided to wait til I got back before we started my new maintenance medications. After my vacation, which was awesome because of the energy the steroids gave me, we discussed other options. We had talked about Benlysta which is a new medication, but decided against it because it would require me to come in for infusions or injections and that would not work with my lifestyle and job. So, we decided on Imuran. We waited a few weeks of me being on the Imuran before we started the arduous task of tapering, and when we did, we did it very very slowly. Along the course, we also had to do a lot of adjusting of my Imuran, as it was causing a dangerous decrease in my white blood cell count. Eventually I got off steroids. It was a long and trying experience but now I’ve been off steroids for about six months. I know that if I have a flare, I may have to go back on steroids, but I’m happy to be off for now. I know tapering steroids is a difficult experience that will vary for everyone. It can take months to years, but you have to be patient. Reducing stress, exercising, eating a healthy diet, and keeping positive help make the process go a lot smoother.

Ask the Doc- How often should bloodwork be done in a patient with lupus?

Bloodwork for patients with lupus is very important and usually is done regularly. How often it is done is based on the patient and the severity and activity/stability of their disease. Usually I get my bloodwork done every 4 weeks, but there were times when I was doing so great that I only needed to get my labs checked every 6-8 weeks. There were also times after a flare or hospitalization, or after my medications were changed/being adjusted where I had labs drawn every 2 weeks, and even once every week.

Lab tests are very important because  they provide you and the doctor with very important  information. Labs help us determine how active the disease is and how well the medications are working. It also can tell us if the medications are causing any unwanted side affects. It can also let us know if something new is brewing.

Some of the routine labs I get done are as follows;

Complete blood count (CBC)- This tells me if I am anemic ( low hemoglobin and hematocrit), or if I have low platelets or low white blood cell count.

Complete metabolic panel (CMP)- This checks kidney function, electrolytes , sugar levels, and liver enzymes.

Anti- dsDNA – These are antibodies to double stranded DNA which is a lupus marker and can help tell how active the lupus is.

Complement levels (C3 and C4)- Low levels of these can indicate inflammation due to lupus.

CRP: High levels of C-reactive protein can be indicative of inflammation and lupus activity.

Urinalysis: Abnormalities in the urine such as blood or protein can mean there are issues with the kidney.

And every once in awhile my doctor will order a vitamin D test and thyroid test.

Getting your blood checked regularly is an important part of lupus management, which reminds me it, it’s time to go get mine done!

Self Diagnosis

One of the most frustrating things for a doctor is when a patient walks in handing them the diagnosis they believe they have. They’ve been online and they’ve compared all their symptoms, and they even know what treatment they need. They just need the prescription.Now I am all for patients educating themselves and being proactive about their health, but there are a couple things that are wrong with this situation.

First, not all sources are accurate or up to date. There is a lot of information on the web, some of it is good, some of it is not. Some articles are simply just someone’s opinion and have no study behind it. In truth, as a physician there are only a few sources I trust. I will share that in a later post, as well what a real clinical study is.

The second is that it creates a dangerous bias. The patient becomes so adamant about what they believe is their diagnosis that they are unwilling to hear anything else. So what can happen is the patients start telling their symptoms, guiding their doctor to believe what they think they have. They inadvertently leave out other important details or exaggerate other details. The doctor now has inaccurate information, and sadly sometimes doesn’t dig any deeper because the patient has already handed them a lot of information that does fit a diagnosis.

Take for instance Patient A. She has been having some abdominal pain for the past few days. When she does her search online she notices that her symptoms are similar to those who have gallbladder infection. The pain isn’t quite upper right quadrant but it’s close. She has had some vomiting and diarrhea. She thinks she had a fever but she didn’t really check. She thinks maybe the pain occurs after she eats. She fails to state that her urine has been smelling a little funny and cloudy, and that she has been peeing more frequently because she doesn’t see it as being important for her diagnosis of gallbladder infection. The doctor hears all symptoms leading to gallbladder infection, and treats it as such, missing the diagnosis of kidney infection.

I’m not saying that patients don’t know what’s wrong with them, because truthfully a lot of them do. We know our bodies.  But doctors have years of education, training, and experience that helps them determine your diagnosis. We know what questions to ask, and know what information is important and what information is not.If you are at the doctor’s anyway, might as well let them do their job and take advantage of their knowledge.

Testing God

I had dinner with a friend last night who is a certified nurse assistant. We were talking about my lupus as I have been feeling really fatigued recently and my latest bloodwork came back with some abnormalities. She listened patiently which I appreciated, and then told me to fast and pray and God would heal me.

She told me a story about how she had a patient whom she cared for at home. A woman with terminal cancer and a prognosis to live for only two weeks. My friend cared for her and prayed with her and convinced her to stop all her medications. When the lady went to see her doctor, her doctor said her labs came back better. She ended up living for six more years.

These miraculous stories inspire me and worry me at the same time. I whole heartedly believe that God can heal anyone of anything, but as a trained physician I don’t believe in discontinuing all medication or stopping all treatment. I’ve had several patients refuse medication, telling me that God will take care of them, and they don’t need drugs. I’m impressed by their faith, but concerned about their eagerness to stop life-saving treatment.

I guess the way I see it is that God has the ultimate power to heal by faith, but that doesn’t mean we should test Him. I believe God created different herbs and plants so that we can make medications to help people. I also believe God gave us special talents to become doctors,healers, nurses, and scientists, and He uses us to do His work. These are my thoughts, what are yours?

Work Environments

As many of you know,  I have been job hunting. My first job after residency was a complete nightmare, and I am terrified of getting into another situation like that.In my interviewing process, I’ve come to notice there are three types of work atmospheres- profit driven, patient centered, and physician friendly.

My first job was very profit-driven. My employers were so focused on the bottom line that  patient care and my physician well-being was suffering. The administration would make sure the schedule was double-booked and I would be pressured to order unnecessary tests and referrals. Medicine becomes like factory work, just putting forth product to pay the bills.Every day was a battle with my ethics and the miserable feeling of coming home knowing I was unable to care for my patients the way I wanted to.

In the completely patient centered environment, the focus is on the patients and providing the best care without regard to money or cost. A doctor could spend as long as the patient needed and handle all issues in one visit.The doctor would always be accessible. They would stay late, come in every weekend and holiday, and always be on-call. seems like an ideal practice model, but leaves a lot of room for a physician to be taken advantage of, and not be able to make the money necessary to run the practice.

In a physician friendly atmosphere, the doctor’s lifestyle takes priority. They would only have to see ten patients a day and still make enough money. They could choose only to see the friendly, compliant, and easy patients and refuse to see the demanding, untrusting, and challenging ones. They wouldn’t work weekends, or evenings, or ever be interrupted at home for a patient calls. A great situation for the doctors and their families, but not so great for the patients.

I think the ideal practice is a combination of all three. There has to be a drive to work harder and have the ability to earn more and be rewarded for going above and beyond.There also has to be an environment where a patient can have the access to quality care, and have the time to discuss most of their issues. And there has to be an environment where the doctor is not overworked or over stressed, and can focus on giving the best care possible. I truly hope I can find a balanced practice, and that wherever I go, I will be able to practice medicine the way I believe.

Take time to rest!

Well I’m finally moved in and am starting to unpack. I have to say yesterday was a grueling day, even with the movers. We have two sets of stairs in our place, and it was a lot of running up and down. I woke up early this morning completely drained, but I knew I had a lot of work today. I got up, ate some breakfast, helped the cable guy set-up, and started to open up boxes. And then it hit me.

Sheer exhaustion. Like I had been hit by a truck and thrown across the street. Ok, so I’ve never been hit by a truck before (thank God!), so I don’t know how that feels, but I felt pretty crappy. Just achy, and foggy, and lethargic.

I realized that I wasn’t going to get anything done without some much needed sleep. For a long time, I’ve felt guilty about taking naps when there was work to be done. I always feel like I can just work through it. But I realized I can get more work done in less time when I am well rested, than when I am dead tired.

I think it’s really important, especially for people with chronic illness, to listen to your body.Pushing yourself when your body is tired, not only produces inefficient work, but also hurts your body. Our bodies need rest, and our pain, fatigue, cloudiness, is our bodies’ way of communicating that. I took my little nap, and am awake and refreshed! Now, let the unpacking begin!

Ask the Doc- How did you manage your wedding with your lupus?

For anyone who has had a wedding, you know it can be a very busy and stressful time. I had my wedding on September 1, 2013. It was a beautiful day, but it took a lot of work getting there. I had nine months to plan my wedding which was in another state where my family lived. Believe me, there were multiple times when I thought the stress of it all would send me into a flare. Here are some tips on how I got through wedding planning and the big day.

First get organized. Make a list of the things you need to get done, divide them up, and schedule them. So today I will call florists and bakeries. Sunday I’ll go dress shopping. Monday, I’ll go check out some venues. Being able to put everything down on paper, and knowing when you are going to take care of each thing, makes life much easier. You want to avoid doing too much at once. Give yourself a few small tasks or one big task a day. The wedding magazines are really helpful in letting you know when certain things need to be done. Tackling things one at a time, will prevent you from burning out and help you stay right on track.

Delegate, delegate, delegate. I cannot stress this enough. Many hands make light work. I had a lot of help from my bridesmaids, mother, and sisters. So someone was in charge of making decorations, another mailing out invitations, then another checking out places for rehearsal dinner. Get the future hubby involved, it’s his wedding too! Having that kind of help is essential. Now, if you’ve got a little extra money, hiring a wedding planner is a great idea. Some venues wedding packages even come with one.

For a lot of people, dealing with family can add to the stress. Everyone has their opinion of how the wedding should be. My parents have some Indian traditions, and at some point I realized I couldn’t avoid them, even if they added to my costs. The best way to handle this is compromise. Remind then kindly that it is YOUR wedding, but you respect their wishes as well. These are the people you love, and this day is meaningful for them too. See if you can find a common ground. Fighting only causes unnecessary stress for everyone.

The day before the wedding is very important, and I highly recommend not having anything strenuous planned. If possible get things done two days before the wedding. The last thing you want to be doing is working right up to the wire. The day before is a good time to relax, spend time with the fam, or even get a massage/spa treatment. Make sure to get plenty of sleep the night before, eat a good breakfast the day of, and make sure there are snacks and water at hand in your dressing area.

When the big day comes, relax and just let go. Accept that every little detail might not be done, but it is going to be special.If you can, assign a close friend or family member to be in charge of resolving or deflecting any issues, so the only thing you have to focus on is you and your husband and the amazing new life you are committing to. Pace yourself, know your body, and know when to rest. It’s Ok to take a break during pictures or sit out a dance or two. ( BTW it helps if you bring a cute comfy pair of shoes for walking/dancing during reception). If you are drinking, pace yourself too. Alcohol does tend to hit people with lupus harder than other people, so keep in touch with how you are feeling, and save a little energy for your wedding night 🙂

Planning a wedding can be a strenuous thing, but it is totally worth it. It is such a joyous day of being able to share you and your husband’s commitment with the people you love. No matter what happens it will be perfect, because you are marrying the love of your life.

Moving

Well, I am moving in less than a week for my husband’s job, and I am starting to stress out big time. I’m not good with change, and this is a lot of change all at once. We are moving to a completely different city one hour away from where we were before. It’s taken the four years that we’ve lived here for me to finally get comfortable and make friends, and now we’re moving. There isn’t a bone in me that wants to move, and I’ve seriously been dreading moving day.

We will have a new home which I love, but I will admit I’m nervous about because of the stairs. Normally stairs aren’t a problem. I do the stair master at the gym, which, BTW ladies does wonders for the booty. But when I’m having joint pain, or a really bad flare, I worry about getting in and out of the house. It was a concern before I chose this place, but it was the best choice due to location and space.

Then there’s the job hunt. I’ve interviewed at a few places, but I haven’t signed a contract yet. I have this huge fear about about getting stuck in a miserable practice that is completely profit driven, instead of patient centered. I had a really horrible experience with my first job that I was at for two years. I’ll tell you the story sometime, and you’ll understand.

And the packing is making me crazy. It isn’t just that it’s physical labor but it’s emotionally taxing. I am very sentimental and I save everything. I’m talking receipts from a romantic dinner my husband took me too three years ago and clothes that I wore in high school (they will NEVER fit me again). Moving is the best time to de-clutter, and I’ve had to grudgingly throw away a lot of things that I’m seriously attached too.

With all the stress and change, I’m starting to worry about having a flare. And that’s when I realize, I just need to stop, take a deep breath, and know that everything is going to be OK. Life is going to be full of change, especially when I have lupus. I just have to have relax and have faith that I’m on the right track. God’s got a plan for me far better than I could even imagine.