Navigating life's detours while keeping lupus on the straight and narrow

Last month was a tough one. I battled a sinus infection, a bout of stomach flu, nursed both my girls through their bouts of stomach flu, fended off the effects of being anemic (though I didn't know it at the time), and tried to find the right combination of bright optimism and grave concern to cope with my mom's illness. Thankfully, I've made it to May, which is already looking up. It's Lupus Awareness month, and there's so much lupus buzz on the internet, I feel like jumping for joy. I launched four new pillbag designs, too, and growing my business is always a welcomed endeavor and a pleasant distraction. Now, I'm headed back to Indiana for a much-needed check in with my mom and dad, and I'm hopeful things will continue to move in the right direction!

But as my mom's health continues to waver, and I travel back and forth to see her, I know I need to keep my own health at the forefront. Not just for my sake, but for the sake of my family, and particularly my dad. The last thing he needs is to juggle two sickies!

(In fact, I did that once, and I promised never to do it again. Years ago, when my mom had triple bypass surgery, I went home to "help", only to find myself as incapacitated as she was. I could barely stay awake for more than an hour at a time, had zero energy, and had to take a wheelchair back and forth from the hotel to the hospital. I spent most of the time sleeping in an open hospital bed next to my mom, with nurses trying to figure out what I was battling. The day I returned from my visit, my rheumatologist checked me into the hospital, and I received a series of blood transfusions immediately. Over the course of my week long hospital stay, I was diagnosed with lupus-induced pancreatitis, severe anemia, went on a clear liquid diet, and dropped 10+ pounds. I had been absolutely no help to my dad (and sister, who was home, too), and I only added stress to an already-chaotic situation. So the rule I now follow is this: if I'm sick, I stay home.

But if I keep myself well, I can continue visiting my mom. My dad knows I have little room for error, and is a champ for putting up with my accommodations while I'm visiting.  Here are a few of the precautions I took with my most recent emergency trip home, which I'll continue to keep in mind for future trips:

1) Played it smart with my flight:

I got the call that I needed to fly home on a Wednesday evening around 9pm. My instinct was to jump on the first flight out at 7:00 the next morning, but that would have left me with a lot of re-arranging to do, since Johnny was out of town through Saturday. I considered a later morning flight, but that still meant finding coverage for the girls, arranging school details, etc, all in the wee hours of the night, while packing and fending off worrisome thoughts about my mom. Even when my out-of-town in laws came to the rescue, saying they could arrive by noon on Thursday, my innate response was to dash out the door the moment they arrived, taking the first afternoon flight out. I knew it wasn't the smartest idea, because I would be flying during my nap time, but I desperately wanted to be there for my mom. My dad pleaded with me to fly later in the day, so that I could fit in a good nap at home first. Truth be told, it didn't take much for me to acquiesce. I knew that was the right thing to do. While it was hard not to rush to my mom's side, I managed to channel a few lines from my book about not overdoing, and booked the first late-afternoon flight I could. Thus, I arrived in Indiana rested and ready for the emotionally taxing, yet productive weekend. It would have been a very different outcome had I not taken the time to regroup before flying out.

2) Threw the hostess-with-the-mostess attitude out the window:

Knowing my in-laws were coming to the rescue the next day, I breathed a big sigh of relief when I finally went to bed around midnight. But looming in the back of my mind was the fact that I'd just returned a few days earlier from a two-week spring break, and the house was in no shape for visitors. I had my work cut out for me! While Bernie and I made some major headway the next morning, I knew I had to be careful. Did I really want to use up all of my energy I'd need for the weekend cleaning the house from top to bottom in preparation for my in-laws? The answer was decidedly no. After we did as much as we could comfortably do, we just...stopped. There were dishes in the sink, and the guest room sheets were in the dryer when my in-laws arrived, but it didn't matter. They are family - and they get it. Once they arrived, they jumped right in, and I went up to take my two hour nap, so that I could be ready to fly out in a few hours. It worked beautifully, and while I apologized for the haphazardness, I knew a few dirty dishes was a better alternative than an exhausted lupite.

3) Stayed mindful of my nap:

Once I arrived in Indiana, we hit the ground running. My dad filled me in on my mom's status, and we headed over to see her in the hospital. We stayed past visiting hours that first night, but knowing we had a 90-minute drive home, we made sure we left before 9:30 or 10pm. I could have held my mom's hand all night long, but what my dad and I really needed was our rest. We continued that motto every day, my dad dutifully doing whatever was required to make sure I got in a nap every afternoon. Some days, we drove 90 minutes to see my mom, drove home a few hours later, in time for my afternoon nap. Once I woke up,  we drove 90 minutes back, visited some more, and then drove home. Yes, it was a pain. And yes, my dad was an all-star for making it happen, but it was absolutely necessary. (Good news is that my dad slept almost the whole time I did, so maybe he needed the break, too!)

4) Collected my thoughts by writing questions and more questions:

Lastly, I tried to maintain my sanity while I was visiting - balancing the shock of my mom's decline in health with the need to objectively extract necessary information from the medical staff. I knew I needed to keep a running list of questions for the nurses and/or doctors, and had quite a list prepared upon my arrival. But I quickly realized that my mom's health was fluctuating so drastically, my questions had to change just as rapidly. So every morning and evening on the drive to and from the hospital, my dad and I would revise and rewrite our list of questions for the medical staff, for the case worker, for her primary care doctor, etc. Throughout each day, our list of questions evolved. Some days, I'd erase an entire chunk of questions, because my mom could no longer do "X", or something new would present itself, so we'd add a whole new line of questioning. It was good for my dad and me to rehash things before we saw mom, and just after our visit. Not really in an effort to formulate the best questions, but actually to anticipate the kinds of answers we should expect, and prepare ourselves for where we were headed. It helped to talk about what we'd just witnessed, too - whether it was my mom's inability to communicate, or the moments where she kept a firm grasp on my hand indicating that she loved me with all her heart. We allowed ourselves time to reflect on what we were thinking and feeling, and it was time well spent.

As I head out this weekend, I'll keep all of these things in mind, and will probably come back with a new list of "things to remember" when traveling under stress. I'll be sure to share, if so!


Betty said…
I hope you and family are doing well!
Sara Gorman said…
Thank you! We're hanging in there, and my mom continues to improve. So thankful for that!

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