Tag Archives: Lupus awareness

Am I Crazy?

As a physician, I encounter patients who have complaints that seem to make no sense.  Either there are too many vague symptoms which point to absolutely nothing, or they are complaining about multiple different issues, that it seems they are trying to find something wrong with themselves.Others times, they are struggling to put into words exactly what they are feeling.

A lot of times physicians dismiss them as invalid or crazy. And sometimes they are right. Sometimes patients have mental disease that cause them to have paranoia or hypochondriasis ( Side note: I am not calling these people crazy, I do not refer to anyone with mental illness as crazy).Frequently you are faced with malingerers who are making up symptoms simply for some kind of gain such as  time off work, opioids, or government or disability benefits.

But sometimes we are very wrong.

A few weeks ago, I was having some vague symptoms. I was feeling feverish and had chest heaviness with mild discomfort breathing or taking a deep breath. It wasn’t the typical shortness of breath and chest pain of pleuritis that I’ve had before.I tried explaining my symptoms to the nurse at the doctors office so she could tell the doctor, but struggled to really express how I was feeling.She called back later ( Yes, the doctor never spoke to me himself) and said the doctor says ” Just go to the ER”.

At this point I’m starting to feel like I’m crazy. I know I’m not sick enough to go to ER, but I know I’m not well. I explain what I’m feeling to the people at work, all while looking perfectly healthy, and they are looking at me like I’m crazy. My parents are telling me I’m probably just getting sick and should rest. I go to a cardiologist, have an EKG and echo, and they find nothing. I listen to myself explaining how I feel, and realize as a physician it doesn’t even make sense to me.

Eventually it gets better on its own, and I’m left wondering what was really wrong with me. Perhaps I will never know. But it reminded me of a lesson I learned early on in the course of my disease. Always take everyone seriously. Listen to their complaints carefully and completely. And if I can’t make sense of it, send them to a specialist who might be able to. Never write anyone off as crazy.

My Story: Part 7- Self Esteem

Being diagnosed with lupus was a major blow to my self-esteem. I was used to to being a very independent person. I did want I wanted, when I wanted. Being in control of my life made me feel confident. I liked seeing myself as a self-sufficient person.

But now I felt weak. I felt like I was somehow less than all of my colleagues. I would never be that strong woman again. I was embarrassed for people to know. I was afraid of what they would think of me, feeling sorry for me for being a pathetic, helpless person.

As physicians we and our patients hold us to a higher standard. We don’t need to eat, sleep, or go to the bathroom. But here I was needing ten hours of sleep at night, and as many naps as possible. I needed to eat meals so I could take my medications. I was running out of clinic to go use the bathroom because my meds were upsetting my stomach.

Then there was the weight gain. I gained about 20-30 pounds that first year from steroids and my inability to exercise. Previous to my diagnosis, I considered myself to be a pretty girl, maybe even a little sexy. I wasn’t skinny, but I was curvy in all the right places. I was used to guys finding me attractive and flirting with me. I wasn’t perfect,but I felt good about my appearance.

Not only did I gain weight but my whole shape changed. My tummy got fuller, my face got rounder, and my upper back developed a little hump. My lashes became so thin, that even with mascara, you could barely see them. Guys wouldn’t even give me a second glance. I wasn’t even the same person anymore. I was ugly.

It’s taken a really long time to regain some of my self worth, but I don’t feel the same as before. I’ve lost most of the weight, and have started to take my normal shape. As I see how much I still am capable of doing, I realize that I am a strong person, perhaps stronger than before. It is going to take time, and a lot of work, but I believe the person I become will be even better than the person I was before.

My Story: Part 6- Lupus Educational Meeting

Feeling isolated from my friends and family, I decided to seek support at a lupus meeting. My husband drove me into the city to go to a educational meeting, and I remember being so nervous walking into the room with him. I was excited to finally be meeting people like me, but I just didn’t know what to expect. I hadn’t managed too many patients with lupus before, as they usually went to see a rheumatologist.

I walked into the room and my heart dropped. There were people of all ages, mostly women. I watched as they hobbled in with canes, others sitting looking disheveled. There were a couple who looked put together, but the majority really looked like they had struggled to make it out of their home.We sat at tables in groups, and no one was talking to each other. There was an emptiness and sense of hopelessness in their eyes.

After the guest speaker presented, she started to answer audience questions. If I was feeling uncomfortable before, then now I was really a fish out of water. The majority of the questions were not so much about the disease itself, but about the social issues. How to apply for different disability services, where to find free care. Some just simply stating that they felt lost.

I wanted to run right out of there. No. They were not like me. I would not be like them. I would continue working. I had plans. I had a life. Fear crept inside my heart. Anxiety about becoming so disabled I would not be able to continue my career as a physician filled my head. Years of hard work would get flushed down the toilet.

I tried to ease my anxiety by talking to the the presenter after the question and answer session.I asked her what my options were.Are there ways I could make my career work for me? Medicine is a high stress job, and I was wondering if there was something I could do within the field that was less taxing. What if I couldn’t work? What would happen to my loans? Or if I decided to work part-time, would there be a way for me to get health insurance?

To my dismay, she didn’t have any answers. She suggested I speak to social services. I left that meeting more terrified and isolated than before. I decided then that I wanted nothing to do with the lupus community, and I would just deal with my problems on my own. It was just too scary to face my future with this disease.

World Lupus Day!

Today is World Lupus Day! This is a day to raise awareness and support those who are working hard to promote lupus education! I would like to feature Lupus Connection, a non-profit group in Florida thats provides support services for patients in the area. They offer coaching as well as much needed educational and health activities. They also have a blog where I and other lupus bloggers, including the site administrator share our stories.Currently they have developed a ” live lupie” product line to promote awareness and raise funds for their work. I’ve checked out their stuff, and personally love their Reimagine design. Please check out their site Lupus Connection, and support their great mission!

Rachel’s story

Today I’d like to share Rachel’s story. These are her words just edited for grammar and spelling. Thank you Rachel for sharing your beautiful story. You truly are an amazing woman.

In 1999, my mother had a stroke at work. She was nurse. After her stroke, her body started to do strange things. The doctors did some tests but because lupus is so hard to diagnose it took a long time to finally come to the conclusion that it was lupus. She had a sore that they biopsied which was how they found out it was lupus And that is when the battle began.

She went from being a hard working nurse, wife, mother and grandmother to a woman who was so tired at times she could not get out of bed . She did not look sick so most people did not seem to think she was really sick. As time went by she was in and out of the hospital too many times to count. Her hair fell out, she had sores all over her skin, and she was always sick with something.The time came that she had to stop working. It was really sad because she loved her work so much. She loved helping sick people and it broke her heart to stop. But she had to.

After that things got even worse. Eight years into this disease, I started taking care of her and she had a basket of meds a mile high. She needed help with showering and dressing. I had to beg her to eat as she was losing weight fast. She was my mother and best friend and she had taken care of me my whole life.

In the end my stepfather came to me and said he was never home and I needed to either come live with them and take care of her or take her home with me, or we would put her in a nursing home. Although I worked, I brought her home. By this point, her mind was going because of the drugs and the illness, so I took care of her. I’m glad I did because I got to be a part of the last days of this amazing woman’s life. My body was hurting and I was tired but there was no time to think of me, only her and all I had to do.

Two years ago and after a twelve year long fight I held that amazing women’s hand as she took her last breath. She was free now. No more pain. No more lonely days as the world went on with their life while she could no longer keep up. Just peace for her which she had begged for. As much as it hurt I had to move on. She is in my heart always.

Now it was time to deal with my kidney’s problems that I believed I had gotten from my father. The doctors could not figure out why my kidneys where going bad. After almost three years, I got a sore. I had lupus as I was taking of my mother. I was suffering from the same thing, I just did not know it. After taking care of my mom with lupus, knowing what is to come, I am not sure if that is a blessing or a curse, but I would not change it for anything. My story is still being told but now her story has been told and may help someone else. God bless all who have this mysterious disease. I pray this helps someone as it helped me to tell it.

If anyone else has a special story that they would like posted, please send it to me, and I will edit and share it. You never know whose life you will touch.

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.

 

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!