Celebrating Independence Day When You Have Lupus


Celebrating Independence Day When You Have Lupus

Lupus Independence Day Celebrations

While many will be celebrating July 4th with hotdogs, family gatherings, festivities and late night fireworks, those of us with lupus might be waving a white flag rather than old glory.

I can see it coming: the next big holiday, July 4th, and all that is expected of me because of it. I hate that I look at holidays with lupus this way, and I honestly have been pretty low-key in my July 4th celebrations the last couple of years.

With lupus, my exuberance for a relentless calendar of holidays and family gatherings has slowly dwindled. I am tired and I need a break, not another party. To me, if we accept a July 4th invitation, it is just one more thing I need to survive.

I find myself very fed up with other people’s expectations about what I should be doing. The whole thing requires rising early, packing and preparations, long travel time on the road and a day filled with food that will most decidedly trigger a flare.

My own family does not do much in terms of celebrations, but my husband’s family gathers for every single one except Arbor Day, each time saying, “We just never get together like this, so you have to come!”

So how does a lupie survive yet one more long, challenging day of celebration culminating in fireworks long after we are dreaming of being in bed? I go into survival mode, which includes, but is not limited to:

  • Packing my own foods. I do this so I do not have to eat nitrate-filled hot dogs with red food dye. Family gatherings are usually filled with meat as a meal (maybe cheese and crackers and watermelon) and then I must eat light or consume a menu that is detrimental to my health. Typically, I plan ahead and bring something that won’t trigger a flare.
  • Avoid alcohol. Even though I do better socially after a drink or two, it can trigger several days of not feeling well. Alcohol and sun combined can equal double the pain for me.
  • Sunscreen with SPF 75 or more. While everyone is telling me that it is best to get at least some sun without sunscreen, I am slathering it on like a true lupie. They have no clue, and it is pointless to explain because they just tell me of others who do it their way and are fine. Sadly, the sun and heat can also cause me to have neurological symptoms (almost like a stroke, but not quite enough to make me run to the ER) as well as quickly getting a bad sun burn, so I have to find ways to seek shade and cool off. It’s not easy when the gathering place has no AC and everyone is out on the water.
  • Drink plenty of water. I keep hydrated all day, typically with lemon water and ice. The lemon in the water acts as a natural anti-inflammatory.
  • Know when I need to declare my independence. I can only do so much, take so much. If I reach a point where I feel it is either me or the celebration, I have learned to choose me.

Choosing your health over these types of holidays is often something you must do. If you decide to take part in the festivities, plan ahead and make choices based upon making the most of the day, and your life, not upon what other might think or expect.

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by Marlene Wallace and Ava Meena on December 21, 2017