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The last few weeks have definitely been challenging for everyone for all of us living this through rapidly changing nightmare — but especially those of us with compromised immune systems. The #HighRiskCovid19 group. The coronavirus pandemic is spreading like wildfire throughout the world and taking many lives with it. In British Columbia, where I live, three more deaths from COVID-19 were just announced. All of the Canadian deaths so far are local to me.
I have a suppressed immune system from rheumatoid arthritis and the biologic medication I take to treat it. I wrote about this last week, but there’s still so much more I have to say.
Countries are closing their boarders, schools and businesses are closing. People are told to stay away from each other and self-isolate; don’t kiss, don’t hug. The entire world is closing down, with more drastic measures taken every day to keep those most vulnerable safe. Many of us are feeling extremely lonely, marinating in our concerns and in isolation or quarantine as some of us are begging the world to do their part in flattening the curve.
I’m Not Ready to Leave My Son
Those like me — who are at risk because of my rheumatoid arthritis — couldn’t be more grateful for those who take those precautions to keep individuals like me safe.
I can tell you this with utmost certainty: I am nowhere near ready to not be there for my 7-year-old son Jacob. I haven’t let my rheumatoid arthritis stop me from being the best mother to him that I can. (I was diagnosed at age 29, when he was a toddler. I am 34 now.) I try to be independent; I don’t ask for much help.
But I need your help now because COVID-19 is a threat to me.
And it is obviously a bigger threat to him if it kills me or if I am significantly debilitated by it.
Adjusting to Life in Isolation with Chronic Medical Problems
I have not gone out except necessary for a week so far. I only go really early in the morning when things open to try and avoid as many people as possible. I am hoping that Canada and other nations implement policies grocery stores and pharmacies so those most vulnerable have a chance to get supplies they need and avoid possible exposure.
Someone at a Vancouver dental conference tested positive for COVID-19. My son’s dental appointment on March 25 is now postponed.
Our plans are to self-isolate, together, at home.
However, he’s developed encopresis (medical definition: the soiling of underwear with stool by children who are past the age of toilet training) — just to make a shitty time shittier when toilet paper is scarce.
I am fearful of what is next but also grateful that he missed out on being in public school during an outbreak. When he returns to school is uncertain. When I asked him how he felt about the virus he said he was sad for the all the people who are dying. And he misses his friends.
My son and I both need regular medical attention. But health care settings can be an infection hot spot. I am grateful that my doctor office is offering telehealth services but fearful if or when I need to go to a clinic or pharmacy, again.
My son has a pretty good understanding for a child about what disease is. He handles going to the doctor better than most kids his age because he can see how they help me; from a young age he’s been used to medical settings. But having to take him to clinics where they stop and ask you if you have traveled to certain countries while decked out in face shields, gloves, and body suits has made me son feel uncomfortable and ask a lot of hard-to-answer questions.
Teaching and Supporting My Young Child
He knows a lot about autoimmune diseases, which he knows he can’t contract from me. (Well, not counting genetics.) But lately I have been trying to educate him about what an infectious disease is and how we need to protect ourselves.
This is not easy for a young single mother to face, with the added stress of rheumatoid arthritis. I am constantly doing mental health checks on myself.
Every time we enter a room the first thing my son and I do is look for the hand sanitizer or bathroom to wash our hands, then we try our hardest to not touch our faces. But as we all know, children don’t always listen. Hell, these times show us adults definitely don’t listen either.
I can only imagine what this is like in a child’s eyes. I am trying my best to educate him but not give him nightmares. I am making attempts to keep him calm, happy, and entertained but safe and well taken care of. And I have to try to take care of myself when stress leaves me feeling near paralyzed.
Living with a chronic illness has prepared us well for self-isolation. I am used to days or weeks at home, without people, but this time is obviously quite different.
My son reads books, plays PS4, and talks to his friends during that. He has Netflix, Disney, and other streaming networks to watch anything he wants — far many more options than I had as a kid in the nineties. He’s young enough where he still loves to watch the same movie 13 times in a row for a few days in a row. (If only I could be entertained like that again.) He has more Legos and transformers than I care to continuous pick up or step on.
At least he has options and I can still rest. If we see any friends or family, we are strictly only outdoors and sticking to current self-distancing protocols. I will request they wear a mask around us and use hand sanitzier. We don’t share equipment like bikes or scooters and we don’t really go to playgrounds until this passes.
We are doing our part to flatten the curve because we HAVE to. Are you?
Advice for Other Parents Who Are #HighRiskCovid19
My time on the Arthritis Research Canada patient advisory board has taught me a lot about my arthritis and made some connections I normally would not have. I reached out to one of their researchers for advice as a single parent with a compromised immune system.
I spoke to Mary De Vera, PhD, a pharmacoepidemiologist, assistant professor in medication adherence in the Faculty of Pharmaceutical Sciences at The University of British Columbia and a research scientist at Arthritis Research Canada. Here’s what she had to say — as a researcher, mother, and cancer survivor.
Q: What advice would you give parents with compromised immune systems to take and to teach their kids about contamination?
A: “Children are the best humans. They are caring, adaptable to change, and curious. Because of this, what has worked for us then and what still works for us now is to appeal to these qualities. Children are caring and I think I can speak for all of us living with conditions that our children want to take care of us as much as we want to take care of them.
My older daughter was 4 years old when I was undergoing chemotherapy. We explained to her that even though our bodies are made to fight germs that make us sick, sometimes our bodies cannot, like mama because she is already sick with cancer. That is why she, her dad, and everyone have to help keep the germs away from mama so that mama does not get even sicker. Children are also adaptable to change and respond to reminders and positive reinforcement of good behaviors. What worked for us then and still working for us now is turning things is turning things into routine. For example, at home, the girls know that we wash our hands with soap and water: as soon as we get home, right before we eat, every time we go to the bathroom, and whenever we blow our nose. Away from home, we do the same.”
Q: Why is social distancing important? Does this mean playdates?
A: “Social distancing refers to actions that people can take to slow down the spread of a very contagious disease. Some well-known social distancing actions include cancellation of major league sports seasons, concerts, and other events where large groups of people gather. In some of our communities, schools have been closed and workers encouraged to work from home if possible.
The idea is that by limiting contacts between people, social distancing actions may interrupt or slow down the spread of COVID-19.
By slowing the spread of the virus, social distancing also gives our health care systems a “fighting chance” against COVID-19 by not crippling already strained resources. We must not forget that although the virus is at the forefront in our society and the world, there are many patients with serious conditions, including arthritis and cancer, who also need these health care resources.
Keeping family or household units together as in social distancing not just slows down the spread of COVID-19, it also helps with contact tracking in the event there is an infection. This means having less people to track in terms of who they may have possibly infected.
Although I have seen recommendations with respect to playdates in terms of wiping down surfaces before and after play and ensuring handwashing, for this time, for my family, social distancing also includes no playdates.
We also have parents, grandparents, and older people in our communities who are vulnerable. We humans are social, feeling, touching creatures so the act of distancing from each other does go against our grain. However, we need to think of this as protecting each other.
In the face of these unprecedented times, community, national, and global efforts all begin with each individual.”
Eileen here again. So, if you’re still with me, please: Think of me. Think of Jacob. Think of your loved ones who are high-risk because of their age or health issues. Stop going out for anything less than essential.
Do your part. We need your help. We need your help to survive.
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Interview with Mary De Vera, PhD, a pharmacoepidemiologist, assistant professor in medication adherence in the Faculty of Pharmaceutical Sciences at The University of British Columbia and a research scientist at Arthritis Research Canada