Monthly Archives: May 2014

My Story: Part 4-Friends

I waited a few weeks before I told my friends. I wanted to try and make sense of things first, and part of me felt embarrassed. I don’t really recall making a big deal of it and calling my friends just to let them know. I just brought it up casually when I had spoke to them, and usually it only came up when I wasn’t feeling well and had to explain myself.

I remember defending myself to a girlfriend about why I couldn’t go out to the club one night. She didn’t understand why I could no longer stay up til 3 in the morning dancing. Prior to lupus, I could go out all night, drive home late, or even crash at a friend’s place without thinking twice. As much as I tried to explain the fatigue and body pain, she felt like I was making excuses. She accused me of ditching my friends because I had a boyfriend now.

I wasn’t able to go out as much, even though I wanted to hang out with my friends. After declining several invitations, friends stopped inviting me out. It crushed me that no one understood and was willing to just come meet me and hang out locally. I felt very isolated at that time, and felt the only person I had to talk to and hang out with was my boyfriend. It was a really lonely time.

There were times that I wanted to ask for help, but my pride wouldn’t let me. I didn’t want to inconvenience anyone. Sometimes, I just wished they would call me, ask how I was doing,  ask if there was anything I needed. It felt like no one cared.

Maybe it was my own fault. I never really told anyone just how bad it was. I never really shared how I was feeling, or that I needed their support. I hid my pain, and my fears and anxiety. I pretended everything was okay, so how could I expect anyone to know what was going on inside of me?

I did gradually start telling more of my friends, and I started to get comfortable sharing what I was experiencing. But this led to another set of issues. I know my friends always felt uncomfortable, unsure of what to say. They were always offering impractical advice, telling me to just stay positive, or telling me how a friend of a friend of a friend has lupus and she’s doing just fine. Or they would say they would pray for me, or they were there for me, but that would be it. No follow up, no checking in.

Dealing with my friends was one of the hardest parts of being with diagnosed with lupus, and it made me realize I need to work on my communication more. I am still learning how to express myself clearly and be direct about asking for what I need and want.

 

The Waiting Room

I read a post on Facebook, where someone was complaining that they were in their doctor’s office and the doctor was seven minutes late for her appointment. Hearing these type of things really frustrate me. I’ve been on my fair end of long wait times, and believe me I know it sucks, but I promise you it’s just as bad on the other side. Chances are if the doctor is late for your appointment, then she is running behind in general, which ultimately means she’s going to be staying way late to finish everything up.

I understand as a patient what the waiting room feels like, and I encourage other doctors to understand too. Sitting in a waiting room can be a very anxiety-provoking experience. You’re concerned about what the doctor is going to say about your test results, or that she’s going to be upset at you for not taking your meds for the past couple days because you ran out. You’re scared that you won’t be able to express yourself or have enough time for all your questions. You may also be worried that you have to go pick up the kids, or make it to the bank, or that time is running out on your meter.

And then on top of all that stress you are sick. Your exhausted and your body hurts. The only thing you want to be doing is laying in bed, and truthfully it’s what your body should be doing. And maybe you’re hungry. God knows what happens to me when I’m “hangry”. I get dizzy, and my head hurts, and I turn into Oscar the Grouch. You need to be home, but instead you are in the office waiting for what feels like hours.

Doctors don’t like keeping patients waiting, but it happens. Maybe the patient before you came in late, or perhaps someone walked in because they were sick. Or maybe someone had a fifteen minute appointment, but it ran a little long because they had a lot of issues. Sometimes it’s a scheduling issue. Someone from another department accidentally double booked, or even worse, the administration requires time slots to be double-booked. Other times we have a serious emergency where we have a patient who needs to be transferred to the ER. We’ll have to fill out transfer paperwork, update the medication and medical history lists, provide emergent treatment, and keep an eye on the patient til EMS arrives. Sometimes it’s a phone call from another doctor or family member about a patient in the hospital. I remember being locked up in my office on a twenty minute phone call like this, and when I came in to see my next patient, she accused me of sitting around on my computer in my office doing nothing.

For my patient readers, I ask you to be understanding with your doctors. It’s not an easy job, and the truth is when you are the patient who has the emergency or special situation we will give you all the time you need. And for my physician readers, we have to respect our patient’s time as well, keep them in the loop so they don’t feel forgotten,and be considerate of what they are feeling as they wait.

Adaptability

Yesterday I went out to a Lupus fundraising event at a restaurant in my town. The money collected went towards supporting research at a local academic hospital. It was so amazing to see all the support from the community. The event was hosted  by a young woman with lupus and her boyfriend who was part owner of the restaurant.  She shared her story with me about how she used to be a professional dancer, and loved going on auditions until lupus took that away from her. She now works full time as a make-up artist.

It inspires me to see someone who has lost what they loved, but didn’t let it keep them down. Instead she found something new to love. Sometimes it is all to easy to give up completely because we can no longer do what we love or are familiar and comfortable with. It’s easy to become close minded and think “Well, now, I can’t do anything.” I’ve often wondered what I would do if I couldn’t practice medicine anymore. I’m really not qualified to do anything else. But maybe I could teach. Maybe I could do research. Maybe I could write a book.

I think in order to not just survive, and truly live, we need to be adaptable. We really do need to think outside the box. We need to reach beyond ourselves, and explore all that we can be. We can develop our other talents, or learn new skills. I challenge every one of you to discover something new about yourself and use it to do something great!

My Story: Part 4: Love

My boyfriend and I had only been dating for a couple months when I had been diagnosed. He also was a resident so he had an idea of what the disease meant. Neither of us really knew what a life with lupus meant, but we knew it would not be an easy one.

I remember one day driving with him to a wedding a few hours away.The conversation of having children came up. If I had a kidney biopsy, and things looked pretty bad, I may have to be on medication that could possibly prevent me from having children. With the anti-phospholipid antibodies, even if I could get pregnant I may not be able to carry a pregnancy. And then there was the concern for my own health, having bad flares during pregnancy. We talked about freezing eggs, in vitro, surrogates, and adoption. Pretty heavy stuff for a new relationship, but I wanted to make sure we were both on the same page. I didn’t want to get too attached, only to have him realize it was too much to handle and leave. He had told me before that he really wanted to have children, and that passing on genes was the purpose of life. I told him then I would understand if he wanted to end  the relationship.

He did the opposite. Instead of running away, he moved in with me four months after we had started dating. I was having trouble with some of my daily duties. After work, in the evenings, was the worst time for me. I’d come home so exhausted, I couldn’t prepare food for myself. Forget about cleaning. Some days my fingers hurt so bad I couldn’t pick up a dish or brush my hair. Other times, I couldn’t get on and off the toilet, or out of bed without assistance. He made a bold move moving in with me, knowing he’d have to care for me. But that’s how I knew he was a keeper.

The next few months were tough for me, and I’m sure they were rough for him too. I know there were times when he’d considered giving up, and moving on. But he stuck by me, and even married me three years later.

I know things don’t always work out that way, but I do believe in a God that provides. I believe things happen for a reason, and I believe whatever happens in our life, we should never give up. Not on life, or love, or ourselves. We always have to hope.

Lupus Awareness Month!

May is Lupus Awareness Month, and May 10th is World Lupus Day!  This month I’d like to feature extraordinary people in our lupus community who continue to fight and raise awareness about this mysterious disease. If you would like to have your story posted on this blog, please send me a message.

This weekend I will be attending a lupus awareness fundraising event. It’s exciting to have an event in my small community town. I am inviting a few friends who know I have lupus, but  despite being a doctor,  don’t really  know what lupus is. This will be a great opportunity to share, and I encourage all of my lupus family to find an event this month, invite their loved ones, support research, raise awareness, and just meet other cool people battling with the disease.

If you would like more information about events in your area, I would check out The Lupus Foundation of America at www.lupus.org. They have several chapters in different states. Let’s get active about raising awareness!