Emotions of Lupus

Traveling with Lupus

Dear Diary,

Wow, it’s been over a month since I last wrote. It’s taken me that long to recover from the two-week trip back East. Traveling with Lupus is ALWAYS a challenge. From making sure you eat properly and get enough rest to making sure you take your meds on time and avoid stressful situations—putting your health needs first isn’t always easy or possible.

We visited my stepdaughter in Michigan, my sister in Maryland, and my son in Boston, traveling by air and by car.

Traveling with Lupus

So, as Hubby, who’s a retired Air Force veteran, says, I have to remember to “improvise, adapt, and overcome.” I had plenty of practice with the trip, too. Not that too many things went wrong, but there were interesting and unexpected issues. Like, having to find gluten-free and dairy-free options for my diet on the road. I did my best to find restaurants along our route beforehand, but for one reason or another, it didn’t always work out.

Then, there was the moment when Hubby was so taken by the beauty of George Washington’s Estate at Mt. Vernon, where the family was sightseeing, that he let go of my wheelchair without locking the wheels. Off I went, slowly rolling down the rocky path, still thinking he was pushing me. It wasn’t until I started gaining speed that I realized I was on my own. Oh my goodness! He didn’t even hear my screams as he snapped shot after shot of the sprawling Mt. Vernon property. And, unfortunately, I tried in vain to stop myself by dragging my foot–big mistake. I injured my leg and back trying to stop. Thankfully, a few bystanders came to my rescue and the only thing to fall out of my wheelchair was my cell phone. What a sight that must have been! I was too relieved to be embarrassed and too amused to be angry at Hubby. Poor thing, he felt bad enough.

Then, there was the last night of our stay in Boston. The Air Force Base at Hanscom told us that we couldn’t extend our stay for one additional night due to exercises or some such thing for active duty members. They’re given priority for housing accommodations over retired veterans. So, we had to improvise by finding a hotel at the last minute for our final night visiting our son.

The worst of the unexpected was during the last leg of our trip, at the airport in Michigan, as we went through airport security. I had my wheelchair. The TSA folks made me get out of it to go through the metal detector. That was fine. I had no metal on me, other than my MedicAlert bracelet, and that didn’t even activate any alarms.

The wheelchair, however, was a different matter. As I painfully stood there waiting for them to return my wheelchair to me, I noticed several people suddenly hovering over it. Gloved hands, cotton swabs, and frowned faces. My heart started racing as I wondered what in the world was going on. Hubby went over to ask, and they told him that my wheels tested positive for explosives. WHAT?!

Next thing I knew, I was being informed of my rights to a private search. But, I declined saying they could search me right there in public for all to see. It was humiliating as I looked at those who stared at me. I was shaking and in pain. The TSA woman was kind enough, though.

I just kept trying to focus on how secure I should feel that they’re being conscientious and weeding out possible terrorist activity. But, I’m no terrorist. I’m just a woman with Lupus who’s tired and in pain and trying to get home!

Once the situation was all cleared up, and they realized that I was no terrorist, Hubby and I took the flight back to Reno. I was never so happy to be at home. But I knew the adrenalin surge from the stress of the airport debacle was going to hit me hard. I prayed that I wouldn’t have a flare, but I did.

Two weeks in bed. Constant fevers. Pain when standing. Pain when sitting. Total exhaustion. Numbness. Swelling all over. Tears. The price we who have Lupus pay to live is very high. Visiting family should have been no big deal, and while I was successful at doing the “improvise, adapt, and overcome” thing, I was unable to control my body’s response to it all.

The only way out of a flare for me is to do nothing but rest and recover. I wonder if there’s a saying about that the Air Force….



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