I hate this.
I hate this.
I hate this.
I cannot count the number of times I have said these words, over and over in my head. In the beginning, each time I said those three words, I could feel my heart rate rising. Stop, I would tell myself. Focus on the task at hand. You cannot lose your strength. So, I started adding:
I am thankful to be here.
I am thankful to be here.
I am thankful to be here.
Today, November 20, 2020
I didn’t think this day would bother me but it does. I’m filled with a mixture of fear, sadness, and relief. Today, I cannot remember where I left my shoes, but I can recall this day, a year ago, like I’m watching a movie. A traumatic experience can trick your brain, and as you recall the memory like a film, suddenly you feel the emotions again too.
November 20-24, 2019
A FaceTime conversation with our son worried my husband and me so much that we couldn’t sleep. We knew we needed eyes on him, right away. We decided I would fly to Chicago the next day. It was a hunch, a mamma bear feeling in the pit of my stomach that something was wrong.
I went straight from the airport to the restaurant to meet him. A huge smile and a tight hug. We ordered. He didn’t eat much, but he was talking about friends and classes. I persuade him to come back to the hotel to sleep that night. When he took off his sweatshirt for bed, I saw it. A lymph node the size of a small sweet potato, hidden by the hood of his beloved sweatshirt, on the side of his neck.
I said, “How long has that been there?”
“What?”
“That thing on your neck.”
He went to the mirror, “Oh, I don’t know.”
“You feeling ok?”
He said, “I’m just stressed with classes and exams coming up. I’ve been so tired.”
“Ok. Well, we need to get to a doctor tomorrow.”
"Mom, it’s nothing.”
We went to sleep. His continuous glucose alarms went off a couple times in the night. He would wake, give some insulin, roll over and fall back asleep. Sugars weren’t too high; nothing too alarming.
We went to get breakfast the next morning. He looked so tired. Again, he didn’t eat much. He said he had a sore throat. The alarms started again. This time they were climbing, and fast. By 10:00, he was in the 400s. Not good. The insulin he was dosing was not working.
I was afraid to put him in an Uber and try to get to a walk-in clinic, and I wasn’t even thinking about the ER. I’m still learning about these diseases.
Instead, he called the University Wellness Center and asked for an appointment. They were filled, but said to come on over and get on the wait list. When we arrived, he told the nurse how he was feeling and told her of his three autoimmune diseases. She told us she needed to speak to the doctor. We sat out in the hallway, away from other sick kids, and waited. Within 30 minutes, he was back with a doctor. “Wow,” I thought, “that’s nice that they took him back so soon.”
I sat and waited. Please don’t be mono, please don’t be mono. Please be strep. Please be strep.
I know it may seem strange to wish for one illness over another, but I knew we could get antibiotics for strep and he would start to feel better. For mono, there is no antibiotic. It’s a rest and wait and see how you feel kind of illness.
Mono can be stressful for any Type 1 diabetic, but add in Addison’s Disease and it’s trickier. My son is already on steroids every day to compensate for the lack of cortisol in his body. His body struggles to fight any infection, any virus, any stress. If it’s mono, he will have to take more steroids to protect his body. More steroids means higher blood sugars. Higher blood sugars means a risk of your body producing ketones and possibly inducing DKA (diabetic ketoacidosis), which is life threatening.
As I was chanting for it not to be mono, over and over in my head, he texted, “Mono”.
I started crying. Our first big illness since his diagnosis. What about his classes? Finals? Thanksgiving? Pull it together. He can't see you cry. You need to be strong.
I took a deep breath, and texted him, “I want to speak with doctor.” I wiped my tears away.
A nurse came out and took me back to his room.
Doctor enters and says, “This is no big deal. Just drink lots of fluids, take some Advil for the sore throat, and try to get as much rest as you can. Watch your sugars.” He handed us a pamphlet explaining mono.
“But he has Addison’s Disease. Do you have any suggestions for how to manage that?”
“No, you don’t have to do anything different.”
My face is turning red. I can feel it creeping up my chest.
Doctor says, “He told me that his main doctor is in Boston, and you live in Florida. I recommend finding an endocrinologist locally. It’s not very responsible to have his care managed from so far away.” And the doctor leaves the room.
If I were a cartoon drawing, you would have seen the steam coming out of my ears.
My son said, “Mom, don’t.”
“What?”
“You look like you are ready to kill him.”
My Italian temper is flaring and he knows my fuse is short, especially when it comes to my sons. “Get your coat. We’re leaving.”
We check out, and I am shaking. As soon as we are out of the building, I call our doctor’s office in Boston. They put me straight through to the special diabetic nurse assigned to my son.
She listens and says, “Turn up your ringer and do not walk away from your phone. Be sure you have paper and pen with you. Let me talk with the doctor and we will call you right back.”
I breathe. We walk back to the hotel room and he lays down to rest. I go into action.
Text my husband with the news. Text my brother to see if we can move in with his family for a few days, instead of staying in the hotel. Jump online and start looking at university policy for withdrawing before finals.
She calls me back. We put her on speaker and I start writing. I have a page filled with instructions. Before we hang up, she says to call any time; all on-call doctors have been alerted to the situation and will have easy access to his file. She says, “The next three days are critical.”
Critical. It sits in my brain like a weight.
I turn to my son, “Do you understand now why I wanted to kill that doctor? This is why you always have to advocate for yourself. Don’t trust that just because he’s a doctor that he knows more about your body, than you do.”
My son nods his head and picks up his laptop. He goes into action emailing professors, reaching out to his ultimate frisbee team, his roommate. He calls the Student Accessibility Center (they help kids with disabilities) and asks what his steps are for leaving campus early and missing finals. They listen and they jump into action to help.
We have a plan. My brother is on his way.
Critical. What does she mean?
He seems ok. Tired, maybe a little green coloring to his face. I look at the instructions from the doctor. Ok, we’ve got this. Give stress-doses of the hydrocortisone every 8 hours. Check. Change his pump to adjust the amount of insulin he’s getting. Check. Use blood ketone meter every 3 hours to check for elevated ketones. Check.
It’s going to be fine. We rest.
I am not going to go into all of the details of the next three days.
We are not fine.
Here's an overview: In the beginning, I am up every three hours checking on him. His blood sugar numbers weren’t making sense to me. Our doctor’s office called two times a day to check on him; every morning we changed his insulin doses. Addison’s Disease also affects his heart; the amount of steroids he was on was taking a toll. He was barely eating. Sore throat was worse. We were watching hour by hour. Advil, Gatorade, Rest. Repeat meds. Make adjustments.
I talk to my husband. I’m not sure when we are going to be able to fly home. His voice cracks. We have not spent Thanksgiving apart in 24 years. The worry and fear I feel is overwhelming; but for him, being so far away, I think it’s worse. I try to reassure him. Reassure myself.
By the second night, I was afraid to leave my son's side. I slept in the same room with him; I am now testing his blood every two hours. He couldn’t operate the pump on his own; he was so out of it. I'm managing all of it so he sleeps. I do not sleep.
More conversations with the Boston doctor. More tweaking.
By the third day, his heart is racing, and he is very lethargic. Out of bed, straight to the couch, barely talking. Not eating. Trying to keep him hydrated is a challenge. I fear his body has taken on too much and is shutting down. I keep asking my son, “Is time to go to the ER?”
He answers, “Not yet.” It's hard but I listen. He has to learn to trust his own instincts; and I need to learn to trust him.
That evening the chest pains started. He asks me to call the on-call doctor in Boston. She thinks we should go to the ER. I look at my son.
He says, “Yeah, it’s time to go.” And he gets up to pack his bag.
Luckily, the doctor we speak to is the head of the department at Boston's Joslin Diabetes Center and did part of her residency at a nearby Chicago hospital. She called ahead. My brother drove us; they took us straight into the ER. No waiting.
I hate this. I hate this. I hate this.
The ER nurses asked questions, hooked him up to an EKG, started drawing blood, checking his sugars and his saline levels, and gave a bag of fluids. I can see the nurses and doctors chatting through the glass door. Then, doctors start coming in.
First, the one who knows our Boston connection. Next, a doctor who has questions about his diagnosis and how he came to have three autoimmune diseases. Another came in to ask if a resident could pop in meet him. At one point we had 3 doctors in the room with us. I’m thinking this is the pediatric ER - aren’t there other things they should be doing? I am trying to remain stoic, calm. I am rubbing my Catholic saint charms. They help me breathe.
My son barely responds to the doctors' questions. He is trying to read his book, “The Subtle Art of Not Giving a F@#$”. It distracts him. He does not want to be here. I do all of the talking.
Suddenly, it dawns on me.
A friend told me this would happen. My son is a rock star, a freaking medical rock star. These doctors have heard of primary adrenal insufficiency but may have never seen a case in person. Let alone someone with polyglandular autoimmune syndrome type 2 - only 7,000 people in the US have it and most are middle-aged women.
He is a zebra with purple stripes, and they are fascinated. His rare combination of adrenal insufficiency, type 1 diabetes and chronic lymphocytic thyroiditis is something they will tell others about. Great. Fine. Will you please just make sure he’s not having a heart attack? Please?
Cardiologist enters, another friend of our Boston doctor. My son’s heart is fine. We talk about changing some doses of medications. They check his enlarged spleen (side affect of the mono). It’s still enlarged but not as bad as before. He may be able to fly.
At this, my son perks up, “When? Can we go home for Thanksgiving?”
Thanksgiving. It’s now a few days away. He wants to go home.
“Call your doctor in the morning and discuss a plan.” And we are discharged.
I am thankful to be here. I am thankful to be here. I am thankful to be here.
Our Boston doctors cared for us during this time as if we were only a few blocks away. Does it seem crazy to have his care managed from a thousand miles away? Are we being irresponsible? No. His case is rare and Joslin Diabetes Center is one of the best in the world. THE WORLD. An on-call doctor in Boston, whom we have never personally met, called her friends, one whom was not on call by the way, to check in on us.
Medical Rock Star. A nuisance for sure, but I’ll take the questions and ogling all day long if he continues to get this kind of care.
We made it home for Thanksgiving last year. But it was different. He had to wear a mask in the airport and on the plane. I had to disinfect every surface we touched. Once home, people came by to say hello, but everyone had to keep their distance. No hugs. He can’t afford to get another virus.
Sound familiar?
I cannot believe our reality has become yours. The masks, the continual cleaning, the distance and lack of hugs from those that we love.
It’s awful. You hate it. We hate it.
But looking back, on that time last year, I was so thankful for the simple things: being with my husband and two other sons around the table, sleeping in my own bed, knowing that he was recovering. We made it through the worst three days.
I didn’t know then, what I know now about what actually happened in those first days of my Chicago visit, when the nurse said, “The next three days are critical.”
I look back and think: What if? What if I didn’t listen to my gut and fly up there? What if we listened to that university clinic doctor and didn’t change his medication? What if I didn’t have family nearby to lean on? What if he continued to push through the tiredness and the pain and we didn’t notice?
I know the answer.
We would have lost him. He wouldn’t be here today.
Yes, you hate COVID and all of the restrictions it has placed on your life. You hate that you cannot hug your family, or share a meal with those you love.
You hate it. You hate it. You hate it.
We do too. This will be our second year of having Thanksgiving simply, as a family of five. But this year, he is healthy. We are stuck here because of COVID, and I am actually thankful for that. Grateful to have him by my side and to see his amazing smile, even though we can’t be with everyone else we love.
I hope that this year, you try to put hate aside for a bit. That you look across the table at those you love, even if it’s a much smaller group, and you find thankfulness. Gratefulness for the simplicity of this holiday.
Next year, at this time, things will be back to normal. We will be stressing about travel plans, or if our turkey will be done on time. Next year, the hectic pace of life will return.
Yes:
We hate this.
We hate this.
We hate this.
But try adding:
I am thankful to be here.
I am thankful to be here.
I am thankful to be here.
Hug those around your table. Tightly. And know that I’m sending our love to all of you.
