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!

Inspiration from the Garden

So as many of you know, I’ve started a little garden in pots in my backyard. I have some thyme, dill, parsley, oregano, basil, and my favorite is the red chili pepper plant. Most of my plants had been doing OK, but the pepper plant always looked so sad. The leaves would just droop and wilt, and  look completely depressed.

After consulting google, I decided that maybe my plants just needed more water. So, I started watering more frequently, and soaking the soil. The herbs started growing and becoming more vibrant it color, and so did the pepper plant, but the next day the leaves on the pepper plant would start to sag again.

Then my parents came to visit me at my new place, and let me tell you, my father is a skilled gardener. He has all sorts of veggies in the garden as well as guava, mango, and papaya trees. Every time I come home, he’s bringing in a vegetable for mom to cook or slicing up some ripe fruit for a snack. He took one look at my garden and made some changes.

First he moved the plants into a shadier spot. The instructions on the label said they needed full sun, but apparently the direct sunlight was too harsh. Then he moved a couple of them, including the pepper plant, into larger pots because they needed room to spread their roots.Finally he added more soil to the pots, filling them with nutrient rich dirt.

I hadn’t had much hope for them, as I would be leaving for almost a week, but I was greatly surprised. My husband had only had the chance to water them once during that time, and I prayed they hadn’t died from dehydration.When I got home and walked into the backyard I was amazed. The plants were bright and green, and the pepper plant was even starting to grow a little chili.

This made me think a lot about life. I’ve been depressed before, the weight of my lupus and job heavy on my body and heart. I’ve felt the hopelessness of feeling like things will never get better. But little changes can make a huge difference. Removing yourself from toxic situations, changing your environment, surrounding yourself with friends who support you and give you room to grow, feeding yourself with food that nourishes you physically, emotionally, and spiritually can make an impact on your life. And with care from a loving Father, you can turn your life around.

The Right Time

I was at my cousin’s wedding this weekend, and my whole family was there, including my sister and her adorable one year old daughter.  I just got married in September,so everyone was asking when it would be my turn. I answered that we wanted kids but were waiting for the right time.

But when is the right time?

My husband is doing a two year fellowship at a hospital and is working crazy, long hours. He goes in at six thirty, and sometimes doesn’t get home til 10 or even later. He also works every other weekend. We don’t have close family here, so I’d be on my own. We figured we’d wait a couple years, when we could move closer to my family, but now I’m kinda rethinking my plan.

I’m going to be 32 in a couple months, and I’ll be 34 when my husband graduates. I know that I will have a high risk pregnancy because of the lupus and anti-phospholipid antibodies. Honestly, I don’t even know if I will be able to carry, but I’d rather not think about that right now. I’m worried that the longer I wait, the more the risk will increase.

But if I do wait we will have more help and be more financially stable. We will be close to family, so someone will be able to help me during the pregnancy and first few months. I’m also not sure how much I will be able to work during the pregnancy, and I definitely plan on taking the first few months after the baby is born off. My husbands salary will increase after he finishes residency so that will really help with medical bills, and if I’m unable to work.

I’m not sure when the right time is, but I definitely want to get prepared. I plan on seeing a high risk obstetrician to figure out a plan. I know that I may have to make changes to my medications even before I become pregnant. I don’t know when I’ll get pregnant, but when I do, I know it will be the right time.

Beat the Heat

My parents came in to town to visit earlier this week and they wanted to do some sightseeing.  Now I love sightseeing, but that involves a lot of walking around in the blazing summer sun. I don’t know about you, but the bright sun and hot, humid weather can make me feel like crap. I get all achy, and my joints feel kinda swollen, and any exposed skin is susceptible to getting a red, itchy rash. So here are a few tips to protect yourself this summer.

1. Wear sunscreen/sunblock.Growing up I never wore sunscreen. I have brown skin and I never burned, but now if I’m going to be outdoors for a long time I protect myself with a sunblock. It is recommended to use a SPF of 30 or greater. Ladies, don’t forget your faces. You can wear it under makeup or find a moisturizer with sunscreen in it,

2. Wear protective clothing. One of my favorite things are thin cardigans. They are light enough to not make you hot, but offer some good protection from the sun. I have several of them in different colors, so not matter what I’m wearing, I can always throw one on. I also keep an extra neutral toned one in the car. Some people wear hats. I’ve never been to fond of them, but I’ll wear them when I know I will be completely sun exposed.

3. Keep well hydrated. I usually carry a bottle of water in my purse, and one in the car. With the heat, you sweat so much, that you don’t even realize how much fluid you are losing. I drink even if I don’t feel thirsty. When I haven’t had enough water, I really feel it the next day.Dehydration makes me very weak, achy, and lethargic.

4. Get plenty of rest. During those hot summer months, I find I need a little extra sleep. I try to give myself an extra hour at night, and maybe even a little 20-30 min nap in the day.

5. Try to avoid direct sunlight. May seem like a no brainer, but sometimes, we don’t realize we are standing in direct light. At picnics or barbecues, try and find the shadiest spot possible, or bring an umbrella for shade.

Ok, my friends, I hope this helps. Enjoy the summer, but keep cool!

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.