Lupus...The Unwelcome Guest

tree

I’m a “hands-on” Mimi, always wanting to be involved, but on this sunny day when my young grandsons and I entered the play area of the park, the intensity of the sun made my eyes feel like someone had thrown poison into them. I had to tell my grandsons I couldn’t play.

It was then that I spotted a huge maple tree, perfect for a much-deserved pity party.

Walking toward the shade, I remembered how my eyes had been sensitive to light for quite some time. “Just age,” I told myself. The only way I could watch television was to wear dark post eye surgery glasses.

However, symptoms worsened so I went to Dr. Google for wisdom, concluding the symptoms lined up with Sjogren’s Syndrome, an auto-immune disease. Dr. Google recommended examination by a rheumatologist, which I did.

After extensive blood panels, the rheumatologist called me at home. When a doctor makes a personal call, it’s never good news, not in my experience, anyway.

“You have Lupus…specifically Systemic Lupus Erythematosus. It is an inflammatory disease caused when the immune system attacks its own tissues. Now, please don’t go and scare yourself by reading about it on the web. Wait and get your feedback from me.”

That is the back story of the day in the park with my grandsons….so let’s return to my pity party under the maple tree.

Suddenly, a voice behind me sang a repetitive chorus….”God good….God good.”

Who was that?

The singing continued.

Taking a deep breath, I turned around to see who was singing.

It was a young man, probably about 16, seated in a wheel chair, rocking as he sang, “God good….God good.”

“Excuse me,” I said. “Are you singing God is good?”

He smiled, nodded, and continued singing while he rocked.

wheelchair

Quickly, I turned away, heart pounding. “How could he be singing God is good when he is wheelchair bound? Who wouldn’t want a huge pity party over that? And, besides, how could he possibly believe that God is good? Wasn’t God the One responsible for this young man’s limitations? Why wasn’t he mad at God, like me?”

It was then that his napping uncle awakened, introduced himself, then his nephew, Isaac, and said, “Yes, Isaac is praising God. MS is what has confined him to a wheelchair.”

“How can he do that?” I asked.

“Isaac knows and loves God. In fact, he has memorized many Psalms. Isaac focuses on what he CAN do, not what he can’t. He’s going to horseback riding camp in a few weeks and he can’t wait for that.”

Isaac began quoting a Psalm.

It was then that our grandsons joined me in the shade of the maple tree. I introduced them to Isaac and his uncle. My grandsons were too young to understand about the seriousness of Lupus, but in their own childlike way, they understood that Mimi was sick.

On the way home, conversation turned spiritual as we discussed what heaven will be like, who we want to meet first when we get there, and what our room might be like that Jesus is preparing for us.

After dropping the boys at home, tears flowed as I sang, “God is good….God is good.”

What Can You Do for A Newly Diagnosed Patient?

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  • Ask them how they’re feeling and to help you understand their illness,
  • Remove all pressure from them, for the diagnosis itself is devastating.
  • Treat them as you would someone who has just been diagnosed with cancer. Yes, Lupus is just as serious! Bring meals, come for visits, and offer to drive them to doctor appointments.
  • Don’t treat them like they’re being a hypochondriac. Lupus is a cruel mysterious disease, so believe every symptom they report, and follow up with compassion and love. When my eyes were so sensitive to light (and they have been ever since diagnosis), others would think my wearing dark glasses was my attempt at being glamorous. Far from it!
  • If they appear just fine, know that they’re not. Lupus feels like you have the flu every day, to one degree or another.
  • Educate yourself about Lupus. SLE isn’t the only type of Lupus.

 

 

2 comments to Lupus…The Unwelcome Guest

  • Deb Meno

    Hi Sherrie,u
    I am so sorry to hear you are having to battle lupus. I have seen others struggle with it and I know it isn’t easy. The entire autoimmune disease list of diseases or syndromes are brutal and to make it worse it seems like it’s like a pick 3 for $12.99 on a restaurant menu. Most of us that have one on the list have at least one or two more, making life more difficult. Your words were great and it’s good that someone like you, that can reach a lot of people can educate others on this topic. I do not have lupus but I do have severe osteoarthritis, fibromyalgia and chronic fatigue. I live with pain that never stops. Ever. I have had 9 surgeries in 4 years, so it is no picnic!. No one can see pain. So we can look fine and it’s hard for some people to believe anything is wrong with us. Remembering the boy in the wheel chair is important to keep things in perspective but it doesn’t mean you don’t hurt or suffer too. It takes a while to adjust and even eventually come to accept and be at peace with. That while is different for everyone.

    • Hi Deb,
      It is so good to hear from you! I have thought of you so often and missed you.
      Yes, invisible illness is so hard to live with, as you well know.
      Thanks for reminding me not to “dismiss” the pain by remembering Isaac. I tend to do that, thus putting myself and others further in denial.
      Love,
      Sherrie

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