Covid-19

Infusion Prep

The Novel Coronavirus has turned our lives upside down! Though most of us patients are used to staying at home, taking extra precautions in public situations, and being poked and prodded, we are a little out of our element. Though it is said to have a lower mortality rate than SARS or MERS, it is apparently more contagious. So, the spread is faster.

Living through a pandemic as a patient living with a chronic condition or as a caregiver for a patient is extremely stressful. The big invisible boogeyman creeping somewhere outside makes it anxiety-inducing just to go check the mail. And although we are more likely to abide by the shelter in place orders, we are not always able to just stay home. At some point, we are going to have to make a doctor’s visit. Blood tests, infusions, and injections are often the main reason for a non-telehealth doctor’s appointment. The idea of having to go to a hospital outside of an outbreak is already scary. So the thought of having to go to a center or a doctor’s office where I know we’re not 6 feet apart, and many people have sat in those chairs, personally freaks me out. However, #MedTwitter has taught me that the best thing I can do as a patient with an autoimmune disease is to stay on my meds, keeping the flares at bay. Wait, what? #MedTwitter?! Yes, that’s a thing. And through this pandemic, it has brought me solace through education. Some of my favorite doctors like Dr. Rubin, Dr. Charabaty, Dr. Bewtra, Dr. Higgins, Dr. Balzora, Dr. Mahadevan and many more have been working with the Crohn’s & Colitis Foundation, The International Organization for the study of Inflammatory Bowel Disease and the American Gastroenterological Association (AGA), along with their perspective hospitals & universities research and development departments to bring us real-time facts concerning COVID-19 relates to IBD. If you are not on twitter, I highly suggest taking the time to sign up, just to stay up to date with all of the information coming out of the science community as we navigate through this pandemic.

Okay, so infusions. Yesterday, during a webinar on IBD therapies + COVID-19 hosted by the AGA with Dr. Rubin, Dr. Russell Cohen & Dr. Rajeev Jain, and during that talk, they spoke about therapeutic safety and infusions/injections. Both Dr. Cohen and Dr. Rubin agreed that going to an infusion center would be the safest option because centers are currently taking severe measures to ensure everyone’s safety. Dr. Rubin suggested that it would be more reliable than having a nurse who is going from house to house, come into your home. However, Dr. Higgins added on twitter that you can ask your home infusion nurse to wash their hands for 25 seconds, remove shoes and top jacket, etc. So, what to do if you are due for an infusion or an injection soon? Here are five safety precautions you can take to help protect yourself during this time.

5 Safety Tips

Take a blanket

I often travel with a blanket during Flu season to put on the seat of the airplane to protect myself. It has it’s own bag and is folded a certain way, so I don’t sit on the part that touched the chair. For your appointment, travel with a clean blanket in a bag. Then deposit in back in the bag when you are done. Wash immediately when you get home.

Remove Outside Clothes 

Once you get home, remove the clothes you wore to the infusion and shower. This should be immediate. This goes for shoes as well.

Wash Your Hands

Wash your hands before you enter the infusion center. Wash your hands as soon as you leave the infusion center. Wash your hands as soon as you get home.

25 seconds. Warm water & soap.

Sanitize Your Reusable Mask & Gloves

We’ve been using cloth masks with a disposable filter inside, along with nitrile gloves. We spray both with 91% isopropyl alcohol. I also keep a small bottle in the car. I use a small amount to wipe my gloves before I buckle my seat belt or touch the steering wheel. I wipe down the door handle with a small amount as well. 

Call Your Center

Call your infusion center or your doctor (if you take your treatment at your doctor’s office) and ask them what the precautions are that they are taking and what is to be expected of you. Communication is always essential, but during this time of constant change, we should be communicating with our health team often, which includes the facility where we take our infusions and injections.

 

What’s In My Bag

It’s essential to have a little kit with you when you leave the house. Even if you have to venture out to take the dog for a walk. Everything right now is an entire production of PPE and lines. So, in a small sanitary bag, I have a few things that will help me get through whatever task I have to complete while outside.

Extra Gloves

Extra Mask Filters

Travel Bottle of Alcohol

Travel Soap

Monkey Mat

Travel Toilet Seat Covers

Disposable Water Bottle

Stay On Your Meds

I repeat, STAY ON YOUR MEDS! I know the idea of heading out to a center or a doctor’s office is scary; however, you need to stay as healthy as possible, and staying on track with your treatment plan is the best way to do that. If you would like to hear a real-life account of someone’s infusion experience during this pandemic, check out my friend Amber Tresca’s podcast, AboutIBD. She interviews advocate Julie Kennedy of Semi Colon Girl. Check it out here. Amber has a great informative blog post on what to do if your infusion center is closed. Check it out here.

If you are having any sort of anxiety or apprehension about the infusion process during this time, please communicate this with your doctor and team. It’s important to express your feelings and needs during this time. Remember, all of your feelings are valid, and there are plans you can put into place to ensure the safety of your physical and mental health. 

Lunch Lady Chronicles

We are closing out week three of our shelter in place orders here in California, and we still haven’t hit the peak of the pandemic. In three short weeks, everything we’ve ever known has been completely turned on its side. Our streets are bare. Businesses closed. Eye contact and smiles are scarce. Our children are home demanding snacks every hour and making themselves available for zoom meetings photobombs. And we have inadvertently become the Lunch Lady! As well as the IT manager, the Teacher’s Assistant, PE teacher, Martial Arts instructor, and nurse.

In some cases, the teacher and the principal. I haven’t even touched on the other personalities in the home that is now home all day long. Your dogs who usually love being around you are now waiting to get their house back. Life feels more like an episode of the Twilight Zone right now.

The last time Hippo and I spent this much time together, he was a toddler. I was not a single mother. And I was not working. Having a toddler dependent on you is different than having a tween defy you while also being dependent on you. Also, there wasn’t a cloud of fear and anger hanging over his head. Although my child is used to living in a home whose schedule is dictated by a chronic condition, Covid19 is more like an invisible boogie man roaming the streets. It’s stripped him of his friends, his school, his work, his activities, and most of his independence. While simultaneously restructuring his daily routine. Not to mention the fact that it has segregated him from his other parent. Who lives outside of the home in another state. When the world is burning, all you want is your mommy and your daddy. When the world is burning all around you, it would be amazing to have a partner right there supporting and loving us both through it all. However, that isn’t our reality.

Trying to find a balance between his school work, my school work, my financial work, my brand building, maintaining a household, and my health is damn near impossible. Not just because of the emotional stress this whole situation is bringing, but the physical space. There is no space in our small little home. And because I am the only one doing all the things…Hippo and I are pretty gosh darn close now. Much closer than any tween wants to be to his mom. So, how do we do it every day? How are we maintaining?

Maintain A Schedule

Although we are getting up an hour later than usual, we are still maintaining an order of the day. That includes getting dressed, maintaining proper hygiene, eating before starting school. And his school day follows his regular schedule while he is in class through Zoom. Afterward, he will “hang out” with his friends as if he was in school. They play games together virtually, chat through video conferencing, or may read along while the video conference is live. This way, they can still see one another and interact. This is his time. I try to remove myself as much as possible, outside of making breakfast, snack, and lunch.

Lunch Lady

I make lunch special. It’s not the standard sandwich, fruit, and chips he would get while at school. I try to make it a little enjoyable. It’s not only essential to maintain a sense of normalcy, but I want my little one to find some joy throughout the day. Sometimes I add a little treat. So when I make my trips to the grocery store, I make sure to add things that he would enjoy that I usually wouldn’t buy. For example, chocolate milk or cinnamon graham cracker cookies. Anything that would give him a comforting hug. I also allow him to keep his video conference going while he eats his lunch. As much interaction with his friends he can have, I am willing to give.

Ask & Answer

My child and I have always had an open line of communication. Because he is smart, I am a single mother, and we are people of color, I need my child to trust me for our own peace and safety. For that, he deserves honesty. When he asks a question, I answer it to the best of my ability. For him, his fear comes from not knowing. I’ve been honest with him about how severe this outbreak has been. I have prepared him for the idea that he may not be able to go back to school until the end of summer. That he may not be ready to go to work until the Fall. He doesn’t deserve false hope and unrealistic expectations of reality. Our kids need comfort and love, the best way that I can comfort my child is with the truth. 

It’s also essential to ask them how they are feeling. Check-in with them. Ask them what they know or have heard. The kids are talking to each other about it. It’s crucial we understand what we are dealing with.

Outside of their emotional well being, as them what they want to do. What are some activities they are interested in? What issue I had been having was finding new things to do that I thought he would like. Finally, I just asked him what he wanted to do. He gave me a list. We’ve put these things on the calendar so that he can see them and look forward to something. It also gives him a bit of control over these circumstances.

Self Care

Now is the best time to take the opportunity to teach your kids about the importance of self-care. For them, this might be breathing exercises, a game, a favorite book, or a nap. Explain how critical self-care is for everyone in the family. Perhaps set the alarm for a time set aside for everyone in the household to practice their version of self-care separately. If you have younger children, it might be smart to plan self-care time during their naptime. This practice should happen every day to help maintain good mental health for the entire family. 

Social Media Is Your Friend

I’ve spent the last 8 years restricting my son’s screen time, and now I’m helping him navigate through social media. Why? Because the world is connecting with one another more than ever through social media platforms. There are hosted dance parties, yoga practices, dance classes, storytimes, and concerts that have nothing to do with covid19. The world is getting a little closer together, and I found that participating in some of these activities makes us feel less claustrophobic.

There is no right or wrong way to navigate your family through this time. We are all different with different needs and dynamics. Put the health and safety of your family first. Love on each other. Take care of one another and communicate openly about how you are going to live together this way for this extended period. It’s going to take a lot of patience, communication, and an open mind to navigate your way through. Anxieties are high. Times are uncertain. But the love your children have for you and the support you are willing to give them is more durable than the fear that surrounds us. 

 

Blackout Dates

For the past few days, I’ve been trying to work out why I’ve been so anxious during this quarantine period. As a patient living with a chronic condition, I’ve spent more time indoors than out over the past 15 years. So, being forced to stay inside shouldn’t be too difficult physically or emotionally. However, I find myself struggling. I’ve been anxious, sad, angry, scared, frustrated and annoyed. I can’t sleep. I’m either forcing myself to eat something, or I can’t stop myself from eating. I’ve run the gambit of emotion in such a short period. And I couldn’t understand why, until I was talking my feeling out with something the other night. And then it hit me like a ton of bricks, this quarantine time is taking over my limited healthy moments.

I’m sure to someone healthy most, if not all the time, the idea of having limits on your life based on your health is unfathomable. A friend once said, “If you don’t feel well, just take the day. So you can get back to it tomorrow.” Unfortunately, that isn’t how it works for those of us with chronic conditions. It’s like a spectrum scale of health. If I’m at home lying on the couch, then I’m in trouble. And if I’m in the hospital, then it’s critical. The rest of the time, I volley my life between moderate to mild pain or symptoms. My unhealthy days come in clusters. They can be long periods or short periods, but it’s never just one day or two. I miss out on chunks of time. Moments I will never get back. So when I’m healthy enough to do things, I want to be able to do something. Right now, I am healthy enough to work, travel, volunteer at my kid’s school, visit museums and enjoy adventures with my kid. However, right now, I’m wasting my healthy days being quarantined. I’m looking at my calendar knowing that more blackout days are coming. Because inevitably I will flare with one or more of my conditions and so this quarantined life is taking over my 2020.

I also realized that my absolute fury and anguish is also coming from watching people with healthy bodies, play Russian Roulette with their health. As well as other people’s health as people can spread this Covid19 virus with their unhealthy practices and refusal to socially distance themselves from their friends. People have been using this massive national shutdown as an excuse to host parties, workout together and continue on with their normal lives, minus the responsibility of work. It’s a slap in the face to those currently suffering from the disease. Those on the front lines, putting themselves at risk to combat the disease. Those who have lost their lives to the disease. And those of us they put in danger by continuing to unknowingly pass this disease from person to person. Not having the faintest idea of what it is like to have a condition that is doing everything in its power to tear your body to pieces from the inside out. These people mock those of us at higher risk of catching the virus, with their vocal disobedience and ignorance. It’s like watching a bunch of drunk drivers lose on the road. Someone is bound to hurt someone. Yet, there is nothing you can say or do to stop them.
Because here in America, we are free to do whatever we want, whenever we want. Without having to have respect for our fellow neighbours to take responsibility for our actions. Often until it’s too late. I sit, and I watch people I know, and strangers put people at risk. Prolonging this hell. Increasing my life blackout dates. Life is short, I cannot afford blackout dates. However…here I am. Here we are. Praying for more healthy days than sick after we can walk freely in the streets again. However, knowing that in all reality, we won’t. That we will have more blacked-out dates on the calendar than free ones.

I am usually optimistic. I like to end my posts with optimism and hope. A laugh or a solution. But I’m not laughing. I have no solutions. All I can do is hope that more people begin to take this seriously. That we are doing what we can to get past this situation as quickly as possible. The only solution is to adhere to the current guidelines presented by the government. I’m optimistic that we will pull through. I am not optimistic that my 2020 year of healthy life lived days will be sandwiched between government sanction quarantine and disease mandated quarantine. And honestly, that just makes me sad and frustrated. I’m sure for some of you, you are feeling the same emotions. And it’s okay to have them. It’s okay to feel these feelings. They are valid. They matter. The best we can do is be diligent about our health, and our surroundings and give support to one another and the national efforts to combat this pandemic in any way we can.

I don’t have a joke or an anecdote for you today. But I will end with this:

I love you. You are not alone.

xo