Monthly Archives: July 2014

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.

Anxiety

Lately I’ve been feeling quite a bit of anxiety. I still haven’t signed a contract, and part of me doesn’t even want to. I’m so paranoid of getting stuck in a bad job again that whenever I think about going back to work, I shut down. The fear has become quite paralyzingly.

I’m usually a pretty motivated person. I get up in the morning and am ready to go and get things started. But lately I wake up, and I just lie there in bed. I get up to eat, and then find myself back in bed contemplating my old job, and dreading the new job I haven’t even started yet.

I worry if I can handle this new job. It’s still part time, but I will be working some evening and weekend shifts. I will have to work a ten hour day. I also worry that this will be a really busy place, and I will be pressured to see more patients. What if I can’t keep up? What if the stress flares my lupus?

This morning there were a few texts in my morning devotional that spoke to me.

“Anxiety in the heart of a man causes depression, but a good word makes it glad.” Proverbs 12:25

“Instead you ought to say ” If The Lord wills, we shall live, and do this or that”. James 4:15

” When my anxious thoughts multiply within me, Your consolations delight my soul.” Psalms 94:19

I think my anxiety and fear about this new job is starting to make me depressed. And what I forget is that God has a will for my life. If I have faith, I don’t need to worry about the future. I don’t need to fret about this new job. Whatever God has planned for me is exactly what I need.