Stress in the time of stress. My Covid-19 drama and other tales of coping with a pandemic and a family member’s Crohn’s disease.
In 2016 right after the presidential election which resulted in an unexpected win by a candidate who is a businessman not qualified to run a country and among other questionable character issues in my opinion, I immediately was sucked into the news. Our president instituted a travel ban that was supposed to keep refugees and immigrants from certain countries from entering the United States. I don’t even understand how this could have even been carried out, what his policy actually was, and how he really thought this would be successful. It ended up causing chaos in our court systems, judges had to intervene, and advocacy groups sprang into action to help those affected. I would look up the facts now, but it is too upsetting to revisit. I remember being infuriated, feeling helpless and at some point, I decided to just shut it off. Since then, I engage very little with what this administration is really doing in a deep dive way. I get sound bites, read headlines and occasionally read an article. This has been my coping mechanism as I feel helpless and angered and I already have enough I am dealing with that is more important to save my energy for.
The Women’s March was right after the not well attended inauguration (though one of Trumps first non-truths was the over estimation of how many people were there) and I chose not to go. I have had some regrets about this as it was such a strong event and community, support, and hope is what we needed then and still do. Especially when said leader is the opposite of that, being that he is intentionally divisive, dismissive and elicits despair instead of hope.
My reasoning at that time for not attending had to do with my own circumstance and feeling like I lacked the energy to add to the cause. As time has gone on, I have had twinges of regret and some guilt as to my lack of contributions to combatting some of the difficult things that are going on in the world.
As we all do, despair is easy to conjure up when facing these grave realities, Climate change, homelessness, increased mass shootings, racism, violence against women, an uptick in anti-Semitism, and police shootings. Ugh. I know that when I can I do small things to help these issues and that hopefully my energy to engage in a more impactful way will return someday and I will feel proud and loud about it.
Now we are in the middle of an unprecedented health crisis that is fast moving and evolving every day. In a day, so much happens, more cases are reported, Information about how the virus is transmitted and who it is affecting is changing, what we should do to prepare, and it is more than a lot for any of us to process. We all know that the number one thing to do is to wash our hands. All the time. I find myself obsessively washing my hands and wiping things down with wipes. Or spray cleaner. Or using whatever little hand sanitizer I have left.
There is an increased concern for elderly people and those with compromised immune systems which includes those with certain chronic illness and those on immunosuppressant medications. People with IBD are considered to be in this category and the IBD community of doctors is monitoring the situation closely to see how Covid-19 is affecting people with IBD.
In the beginning of the crisis, people in this population felt ignored, when some people were thinking if I get it, so what? They were only thinking of themselves and not others. What we know now is that maybe you are less likely to have complications if you are healthy but there is new information emerging every day about how it is affecting each demographic. Along with that though, we all need to stay the f@*ck home to protect others in our community.
As we have been following our “stay at home” orders, each day brings unpredictable news, emotions, thoughts and things we need to do. Cooking, cleaning, figuring out the safest way to get groceries, checking in with others especially those in need, and more.
In the beginning of the stay at home orders, I had already scheduled weeks earlier, a Coronary calcium score test. I am fine, it was a recheck of something, and my score was 0, so no concern. When they did the scan on March 17, 2020, I left and was aimlessly driving around. I drove by Smart and Final and thought I would pop in to see if they had any toilet paper. They did. One, 4-roll pack limit per person. I was in line to purchase when the phone rang. It was from my doctor, the cardiologist who ordered the test. I felt immediate panic at seeing his number because it was so soon after the test. Was I going to have a heart attack? Well now I felt like I was. I picked up.
“Hello, this is Dr. T, I have the results of your scan. The good news is your calcium score is 0, so your risk of heart attack is very low. However, I don’t want to alarm you, but the radiologist saw something in your lungs that they are seeing in patients with Covid-19.”
Heart racing, I leave the toilet paper for some lucky customer and exit the store.
“What should I do? I want to get tested.”
At first, he said I should just go home and self-quarantine for 14 days, but there was a nurse there who then said I could call the urgent care at St. John’s Hospital as they might be giving the test. I wanted the test. You have to fight to get it. Unless you are a celebrity and I find this infrurating. I called said urgent care. They said I should go to the ER and explain the situation. At the St. John’s ER it was empty and I told them my story. They put me in the infectious disease room with a giant, noisy HEPA filter. The doctor came in with a face mask and gown and asked me a bunch of questions. Because I had no symptoms, had not traveled to any risky countries, and had not come in contact with anyone who was known to have it, she said she had to call the CDC to see if I could get the test or not. I started saying, actually, I was coughing yesterday and had a sore through. She smirked. She left. No one came in for an hour. Other nurses and people working in the ER walked by and were pointing and peaking in. At some point I walked 2feet out of my room and was sternly told I needed to stay in my room. I was not trying to be difficult or unsafe and let me just say that I applaud each and every health care worker in this country. I would do anything to help and support them, and I follow the rules. I have had enough experience with such workers because of my son Lowell’s Crohn’s disease, and only have respect. But as the patient this time, I was getting irritated. There was literally no one else in the ER and there were about 10 nurses sitting at the nurse’s station. I just wanted water. There was a call button. They didn’t respond for 15 minutes. When they did, there was no intercom in this room which was really silly because it meant they had to suit up to come into my room which was wasteful because then all that protective equipment had to be discarded. I just wanted water and to know what was going on.
In the meantime, I called my primary doctor who has been great during this whole process over the past few weeks since this happened. He said he really did not think it was Covid-19 but recommended doing an an actual lung CT scan in the ER to get a better idea which the ER doctor agreed to do. I waited for another hour for them to bring me in for the 5 minutes procedure. Back in the fishbowl sick person room, I fell asleep. 30 minutes later the doctor came back and said there is something that looks like it could be an infection or could have been but more than likely it is not Covid-19. They still wouldn’t test me there. She said there was a doctor in private practice who would be doing the tests in a drive-up fashion starting tomorrow and to call and they can look up my records and decide if I can get the test. So mixed message, you are probably fine, but try to get the test and by the way, what is that on my lung?
I left, called the doctor right away and they said they would get back to me ASAP to let me know when I could come get the test. They called me that night and approved me getting the test the following morning any time after 10am.
I was in touch with my primary doctor on the way home from the ER who said he was going to show the scan to a pulmonologist and get back to me. He also advised self-quarantining at home as much as possible. I have no problem not leaving the house in order to protect the community and wanted to keep my family safe if I did have it. So many questions though. If I do have it, wouldn’t they also have it at this point? Our house is not very big, how do we do this? Should I stay in my room always? There is a difference between quarantine and isolation. Self-quarantine is to protect against spreading it to anyone should you have it and not know it yet, like if you know you had been exposed to someone who did. My doctor pointed out that because the lack of testing, many people are self-quarantining, some of them needlessly. By this I don’t mean that anyone should be going out for any unnecessary reasons or gathering with others but isolating or quarantining at home with your family is very hard.
The pulmonologist who my doctor sought an opinion from in the meantime said it was not consistent with Covid-19 and he was able to go back and look at my last calcium heart scan from 5 years earlier, and they had seen the same thing. As we have all heard, these scans often detect things that are of no concern and can cause unnecessary anxiety and further tests. He did say to follow up with the pulmonologist once it is more safe to see doctors again, but it was not urgent.
I was better at the quarantining for the first few days. I stayed in my room, my husband was relegated to the den and had to sleep on the couch. I would announce every time I was leaving the room. We still shared a bathroom-we have two but with a son with IBD too, I couldn’t make them all share one bathroom. I didn’t cook dinner for a few nights, but they aren’t good at cooking, well they just didn’t do it, and I started to get upset about food going bad and I am hyper-focused on trying to not waste any food at all. So, I started cooking. We kept our distance as much as possible, no one had any symptoms including me.
They said it would take 3–5 days for results. The test was on Wednesday March 18, 2020. The same day the Lakers all took their tests. Surprise! They got them back the next day. I called the office on Friday. They didn’t have anything for me. I said Sunday would be the 5th day, and asked if they would call on a Sunday. They said yes. On Monday I still had not heard. By this time the self-quarantining was not going well but we all still washed our hands endlessly and wiped everything down with the precious wipes I have. We were still staying away from each other as much as possible. I didn’t leave the house except for walks. I felt really tired one day and started imagining I was having trouble breathing. I asked my doctor if I could work out — go for a run specifically — and he said to try it and see how I felt. I started running and felt fine when I did. Every day I would call and was told something different, it is going to take 5–7 business days, or we will be processing your test on Thursday the 26thof March which came and went, still no results. By then, I no longer cared. I felt fine, and everyone was fine too. I was running a few days a week. On Tuesday March 31st, I got a call that the results were negative.
Does my test result matter anymore? Could I have gotten it since then from Sam coming home after being in court (LA County has not closed all courts, but postponed some matters for now) or Jonah who has been doing the marketing?
In the meantime I have been reading so many stories about people being denied testing, people not getting results and what infuriates me most is that the Lakers and, any celebrity, world leader and other known person, not only can get tested, but actually gets their results in a timely manner. Do we not matter? My family like so many others has someone considered to be in the vulnerable population.
Not only does my son have Crohn’s disease, but he has nutritional issues due to his lack of being able to absorb and retain nutrients like non-compromised people which can weaken his immunity, and occasional allergic asthma. He still has to go for hydration, iron infusions, vitamin infusions and other medications during this crisis to an infusion center. And more worrisome is if he ended up having to go to the hospital for a flare so it is most important that he stay as healthy as possible during all of this and we are fighting hard to do that. Just the other night he was having some pretty serious pain around his G-Tube site, so instead of going to the doctor or ER for the pain, his doctor called in a prescription for antibiotics in case it was infected, and a topical cream, which has helped.
Before I stopped caring about my test results, I kept my phone near me at all times as I didn’t want to miss THE RESULT CALL. It was hard not to look at the notifications and news coming through. I had wanted to avoid this as to decrease my already heightened anxiety. I got sucked in, but now I am more balanced. I want to be informed but not overloaded so I check in probably twice a day.
My testing story is just one of many and also highlights problems in our health care system that we knew were already there. My primary doctor has been helpful in guiding me through. The radiologist who first called attention to this-well I understand he had to be cautious. My cardiologist delivered the news to me but has not checked in with me and I had even called him at some point to see if he could help me get the test results, and he has not been in touch. I know the labs are backed up, I do believe most people are doing their best and that any problems that have arisen are part of a bigger problem and can’t be blamed on individual providers. But as usual, the patients are the ones who suffer. And I don’t believe celebrities, or athletes or people with more money should be prioritized.
There is so much more I could say about these health care issues but I feel it is important to recognize all those that are out there every day helping us. The nurses, doctors, administrators, clinical partners, transport workers, and social workers who are managing people’s fears and providing resources, and anyone else working in hospitals or other medical facilities right now. Of course, businesses trying to pivot into other models trying to stay afloat, grocery workers and all those in the food industry. Just be kind and say thank you and help in any way you can.
I do have a point here besides just sharing way too much of my personal health information. We are all stressed now. People we know have gotten sick. People are dying. Young children are experiencing something that they will need a lot of help to process. Parents are juggling work and helping their children do schoolwork at home. College students are away from where they want to be which is with their peers, engaging their minds, and the activities they like. Seniors in both high school and college are likely going to miss out on so many senior traditions and likely even graduation ceremonies. People are struggling financially and need to make hard choices and sacrifices. There is so much, too much.
I have been hearing from our community of people with IBD and other advocates across the country that this is an added stress, on top of the already challenging lives we lead. Their illness does not go away in this global crisis nor do everyday things such as having to make sure we have the medications we need on hand or the feeding and medical supplies for those with feeding tubes or picc lines. Monitoring for disease flares, missing non-essential doctors’ appointments and delaying procedures. Still needing to see or speak to a doctor for other reasons not related to Covid-19 and getting routine lab tests done. And oh yeah, making sure we have enough toilet paper which has become a thing.
Stress upon stress. Then the stress of the unknown result of my test during those 13 days. I was noticeably more anxious, worrying that I was going to come down with symptoms any day, that my family, especially Lowell would, and you can only imagine how it spiraled from there.
I do my best, like all of us to practice self-care and I have ramped it up during this time. Working out, meditating, resting, reading or watching tv, well, I would like to be doing more of that but I seem to be cooking and cleaning a lot. But most importantly, not putting pressure on myself for write that book I always wanted to, or cook something new and interesting all the time, take up guitar again or wherever we all might have thought we could do. Maybe I will do some of these things, maybe next week I will be able to focus more. One day at a time is all we have and to remember that however we feel today, will be different tomorrow and to be open to whatever that is.
Stay safe y’all! Love, kindness and hope. That’s all I got.
