Getting sick is frustrating, but it’s nothing compared with HD
I may be hospitalized, but I still worry about my gene-positive wife
I am sitting up in a hospital bed, trying to write this week’s column. I have an IV in my left arm that is attached to a bag full of antibiotics and steroids. As I start to bring my hand to where the needle is held in place by medical tape, my wife, Jill, puts her hand on mine, reminding me not to scratch. I thought she had fallen asleep, but she had just closed her eyes so I would rest. As I look into her eyes, I feel more concerned for her than I am for myself.
The seeds of my hospital stay were planted several weeks ago. For more than two weeks, I battled a persistent cough. Jill was concerned, so she made me see my doctor, who said I had bronchitis and gave me a prescription to take for six days. I started to get better. So when our daughter, Alexus, called and asked Jill to visit her in Boston from Friday until the following Wednesday evening, I encouraged her to go.
Since Jill was diagnosed with Huntington’s disease in 2018, she’s tried to visit family more often, but doesn’t like to have long periods between the planning and the traveling. She said it makes her more anxious and could lead her to convince herself not to go. As a result, we have become a much more spontaneous — or, if you like puns, on-the-fly — family.
Jill arrived in Boston early Friday morning. I went to work that day, but by noon, I was feeling exhausted. My neck glands were swelling, and I felt acute pain there. When I talked to Jill on my way home, I shared that I was too sick to play soccer the next morning as planned.
Jill said, “Hang up with me and see if you can see your doctor, or go to urgent care.”
I play soccer every week, no matter how cold or warm it is. To illustrate how much I love the game, one year, I fractured a rib on my left side and continued playing. The following year, after that rib had healed, I broke another rib on my right side and continued playing. So for me not to play meant I was in bad shape.
I did as Jill asked and went to my doctor’s office that evening. My glands had swollen even more, and my temperature had reached 102.8 F. My doctor prescribed an antibiotic, and I hoped for the best. Instead, I got the worst. My high fever continued throughout the weekend. Even though my tests came back on Monday morning showing I didn’t have COVID-19, the flu, mono, or strep throat, I was extremely sick. I called my doctor, and she told me to head to the emergency room.
I then called Jill to let her know I was heading to the ER. I asked her not to fret and told her I’d be fine.
“Easier said than done,” she responded. I repeated that I would be fine. She ignored me. When I told her later that I was being admitted to the hospital, she booked a flight home for that evening.
Our daughter made sure she got on the plane, but my thoughts were focused solely on Jill. Stress isn’t good for someone with Huntington’s disease. Would she have an issue during the flight? Would she get confused after she landed?
She called when she landed, and I talked to her as she got off the plane. I arranged for an Uber to pick her up and bring her to the hospital.
I may be in a hospital bed, but I will always be more concerned about Jill than I am about myself. As her Huntington’s gets worse, it may get harder to care for her. But for now, she holds my hand, and everything is OK — until we get the hospital bill, that is.
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Thinking of you all today. Jill, I definitely would have come home too; although, I am not sure how you can travel alone... nice job! I finally got my results and it was positive, CAG 41. The news was devastating even though I already knew. I was laughing about the "spontaneous" trips. My husband doesn't tell me when we are leaving anymore; he will come home and say "pack a suitcase" and we are off to where ever. Hope you feel better soon!!!
I am devastated for you and your family to hear you are gene positive. I have kept you in my prayers since you first posted, so I thank you for sharing your journey with us. I am touched by your willingness to be open about what you have gone through. After Jill’s diagnosis, we were so sad and mourned for a life we wouldn’t have. After we climbed out of the sadness, we worked on defining our new life. With that, came hope, and I have faith you and your husband will do the same.
I am glad you laughed at my pun. Jill didn’t appreciate it, so I didn’t say my second pun “we are a fly by the seat of our pants family” for her sake.
Thank you for the well wishes and I am on the mend.
Thanks for your post, Carlos!