We made it!

We made it to another treatment day without anyone in our family getting sick! The week leading to treatment day has become pretty worrisome for me. What if someone in our family gets sick with or is exposed to COVID? Josh will not be able to get his infusion within the treatment window and then what? The questions I never thought I'd have to wonder about. I used to dread treatment day because it was a reminder that Josh has Paroxysmal Nocturnal Hemoglobinuria (PNH), but today I celebrate that he is well enough to receive his infusion. A welcomed change in perspective.


Almost a year into this pandemic our life looks very similar now, as it did at the start of it. Josh and I have opened our lives to a few trusted individuals who share our views on distancing, mask wearing and being extra cautious during this time. We have made the choice to keep our kids away from playgrounds and play dates and have decided to homeschool. Simply put, Josh is immunocompromised. Since his diagnosis with PNH, I have seen Josh get sick a few times. Once with the flu and then a few random and unexplained fevers which left him incredibly ill for about 24 hours. When he runs a fever, his symptoms are more often than not, profound. The inability to get out of bed & delirium replay in my memory as a reminder of his bodies reduced ability to fight infections.


For those of you in similar situations, I wanted to share what we have been doing to help us stay sane (most days) during this time and please do comment or reach out to us to tell us what you are doing for more ideas! It absolutely has not been an easy year and we have had to adjust to our "new" way of living and are still figuring out what works and what needs change.


Josh & I

#1 - SELF CARE. In whatever form it looks like that day. We are really great at making sure that we each get at least one hour to do whatever it is that we need to to clear our minds, reset and feel good. For me, it is usually yoga or cooking. For Josh, it's almost always surfing but when the surf is not ridable it's yoga for him too! Josh and I started planning mini at home dates for each other once a month after the kids go to sleep and there have been a couple times that my mother in law graciously came over to watch our kids so we could walk down to the beach and spend some time alone, together.




KIDS

There has been A TON of mom guilt in this category. We went from having something planned with friends almost every single day to complete shut down. After many conversations of explaining why we have to stay safe, we now get a response like, "Because of the virus" from them. They seemingly understand and we keep them busy in different ways now. We now have a monthly subscription to a company called the Magic Playbook. Every month is full of easy printable activities that my kids love to do and it provides a creative outlet without adding more planning to my plate! We cook A LOT, in fact every single meal, and have homemade pizza and movie night once a week. We take them to baseball fields and outdoor basketball hoops on a weekly basis and we frequently ride bikes around the neighborhood and take them to the beach by our house. We have found beautiful trails in our area to take nature walks and this year our intention is to get more creative and go on a family date once a month away from home while still being extra cautious and safe. This week we visited a spring and of course, all (including the kids) wore masks. Our kids know that if the masks come off, we leave!





A question I get asked often is if Josh and I are still working and the answer is yes.. A few months before the pandemic, Josh had actually taken a job that is away from bedside nursing where he works in a small group of people and through social distancing and mask wearing is able to keep his exposure risk low. I am still working in the ICU & I am extremely grateful for proper PPE to keep me safe.


The choice to not see family and friends has been so heavy on my heart but today, I celebrate another treatment day complete! Stay safe friends and please please please cover those beautiful smiles with a mask to help protect not only yourself but others around you.

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©2020 *DISCLAIMER Under no circumstances should this blog be used to diagnose, treat or research paroxysmal nocturnal hemoglobinuria (PNH) or any other disease or illness. Day Fifteen LLC is not providing any medical, expert or legal advice for any persons but rather Day Fifteen LLC is only stating their own opinions and their own experiences. Day Fifteen LLC does not claim to share the opinions or beliefs with any other entity or organization written about or discussed on this website. If you have any questions or concerns regarding your health contact your physician and health care providers.