In life with IgG4-RD, a full day of activities can be painful and tiring
I wasn't going to miss my nephew's ceremony, but it came with a cost
Written by |
The time on the clock when I opened my eyes on Thursday, June 18 was 1:45 a.m. I’d woken up just in time to make sure that my husband got up and out of the house. He’d been given an early assignment to cover the Knicks championship ticker-tape parade in Lower Manhattan. He had to be out of the house by 2:15 a.m. at the latest.
After making sure his drink bag was packed and that he was well on his way, I climbed back into bed, but sleep was elusive. A couple of hours passed, and I got out of bed again to iron the outfit I would wear to my nephew’s pre-K graduation.
I was showered and ready to leave by 8 a.m. The 61-mile trip usually takes about an hour and a half. But the second I got in the car and on the road, I knew I was in trouble. Traffic was a nightmare. GPS said it would take me more than two hours to get to my brother‘s house.
Sitting in a car that long always leads to joint pain caused by immunoglobulin G4-related disease (IgG4-RD). So the lack of sleep combined with a long road trip indicated that it would be a long day. Pressing on the gas and brake pedals would also become challenging, as I’d numbed my feet with lidocaine to deal with neuropathy. I knew I’d barely make it to my brother’s house before my feet would start giving me trouble.
I arrived just in time for us to leave in their car for the graduation ceremony. I climbed up the hill with all the other adults, ignoring my pain, and stood for photos. I kept a smile plastered on my face as we headed to lunch. When I sat down at the table, I knew I’d made another crucial mistake: I hadn’t eaten before I left the house, and I don’t take my pills on an empty stomach, so I’d forgotten to take my medications.
One of the other parents rushed to get me a nonalcoholic drink, and I quickly washed down my pills, which hit my stomach like a lead weight. All I could do was pray that nothing else would go wrong.
I spent the next two hours laughing and joking with the children in my nephew’s class. Then it was time to head home. GPS told me it would be another two-hour trip. I wasn’t sure I could make it, but I told my brother I was fine.
As I made my way down the highway, I was hit with pain in my knees, feet, legs, and lower spine. I also had a pounding headache, and my stomach was upset from the pills.
By the time I got home, I’d gone from watching my nephew graduate to having a sick day. I felt like everything I’d been through was worth it, though, just to see how happy he was that I was there. I’m glad he’ll never think of my illness as something that prevents me from seeing him.
Note: IgG4-RD News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IgG4-RD News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to IgG4-RD.
Leave a comment
Fill in the required fields to post. Your email address will not be published.