Living with Lupus

In honor of Lupus Awareness Month, I wanted to devote a post to sharing my experience with the disease. Lupus is a chronic and incurable auto-immune disease that can affect a person’s skin, joints, brain, kidneys and other organs. A distinctive characteristic of the disease is a butterfly-shaped rash that runs across the bridge of one’s nose and both cheeks, called a malar rash. Other symptoms include, but are not limited to—joint paint, stiffness, and swelling; persistent, low-grade fever; photosensitivity; fatigue; chest pain; shortness of breath; confusion and memory loss. (http://www.lupus.org)

My lupus journey started about two-and-a-half years ago. It has been a journey filled with a lot of tears, frustration, and uncertainty. It is a journey that constantly tests my physical, emotional, and spiritual limitations.

When somebody asks me how I am feeling, I will often say “okay”. For me, it’s easier than explaining the chronic pain and stiffness in my joints that greets me every morning and sometimes stays with me all day. It’s easier than explaining the extreme fatigue and the tremendous amount of strength and determination it takes just to push myself so I can simply make it through each day. It’s easier than explaining why I can’t remember things or why I lose my train of thought mid-sentence or why I have to read things over and over again because I can’t comprehend what I’ve just read. I have found that it is easier to hide how I am really feeling and ignore the symptoms than it is to explain the profound affect this disease has had on my life.

Christine Miserando, author of “The Spoon Theory” (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/), explains it best: “The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire.”

People with lupus tackle each day, having to be aware of their limitations and constantly having to pick their battles. For me, working a full day sometimes means that I won’t have enough energy to make dinner, so my family eats out a lot more than we probably should. Deep cleaning the house one day means I will most likely be stuck on the couch recuperating the next day. Needless to say, my house doesn’t get cleaned well very often!

As if the disease alone isn’t bad enough, the medications can sometimes be worse. On any given day, I take at least 10 pills—on chemo day, it’s at least 19 pills. The days immediately following chemo day are often filled with nausea, headaches, and extreme fatigue. It essentially feels like a hangover that lasts for days. The medications help manage some of the symptoms of lupus, but at the same time, they can be harmful and may attack organs like your liver and kidneys or affect your eyesight.  I often have an overwhelming feeling that the medications are doing more harm to my body than the actual disease. But, I know the medications are prescribed for a reason, and if it means I am prolonging my life, than it’s a price I’m willing to pay.

The worst part about having lupus is the effect it has had on my family. I worry that my sons will only have memories of their mom being sick. I can’t spend the whole day out in the sun with them because it will literally make me sick. I often have to stay home while my husband takes our sons to the park or to a movie because I’m too tired or not feeling well enough to go. My husband has had to take on the role of caregiver—something he vowed to do when he married me, but never dreamed would happen at such a young age. Lupus is also partially to blame for our no longer being able to have children. My husband didn’t choose this life, but he has chosen to stay by my side through it all, which has been a tremendous feat.

While lupus is an incredibly difficult and life-altering disease, I can honestly say that some good things have come out of this journey. I learned to advocate for myself and to trust my instincts. I learned that it’s okay to ask for help. I have also met some amazing and inspiring people—many of whom have become wonderful friends—who have lived with this disease for years. I cannot tell you how important it has been to have people in my life who are living with lupus and understand in a way no one else can.

This journey has taught me to count my blessings. I am blessed to have amazing friends. I am blessed to have bosses who have been extremely understanding and supportive and have allowed me the flexibility I need to deal with this disease. And, I am incredibly blessed to have my family who has been there throughout this entire journey and continue to support me and lend an ear on the days when I don’t have the strength to say, “I’m okay”.

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3 thoughts on “Living with Lupus

  1. Christine Shahade says:

    You described what we go through daily perfectly. I do the same and say I am “okay” rather than try to explain what is wrong. The side effects from the meds are horrible. But in the end I, too, feel blessed and feel this disease has made me a better person.

    Thanks for writing this blog.

    Chris

  2. Charles says:

    I was just thinking this today while feeling bad (again). Googled it and saw I’m not the only one who feels this way. I am a 52yo W/M diagnosed 2 years ago with Lupus and RA. Usually when others ask how I’m doing I respond with, “I’m hanging in there.” Now I can respond with something they may be able to relate to.

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