Respiratory Syncytial Virus (RSV)

After a 2 day migraine, with RSV on top, i feel really crummy. Can't eat more than 5 little mouthfuls without retching. Hurt from head to toe and after contracting RSV over 2 months ago, just cannot stop coughing. Already tested for Covid, thankfully negative (all 7 times) but by God I feel terrible. Already been to hospital and discharged a few weeks ago.
Pity-party table for one.

I have a tumor in my pituitary gland in my brain. It became large enough in last 2 years to be dangerous. It has developed a finger starting around my right carotid artery, as it grows it is closer and closer to my sense of smell and peripheral vision increasing my bow 49% chance of loss months ago. ANXIETY PROVOKING. Removal 1/25/22- nope.
But I became sick. December 2nd RSV 2 weeks really sick; boyfriend came down with Covid HERE. Before fully recovered developed my 5th Covid, 2nd in 3 months! Before recovered developed micro bacteria bronchitis. It was January 20th before I started recovering. Surgery was canceled. Roommate (leaving soon), “Well when they gonna do it? #youarealwayssick !” I felt the dagger in my back, the chill of my estranged mother visiting, and became obsessed with NOT being sick. I only made it 23 days, and sobbed.
They won’t reschedule it until my regular doctor clears me. #longcovid flared up after a LONG time without a bad flare RIGHT for the appointment. Temp 100.1, sore throat, sinus congestion, brain fog severe, exhausted. #Dysautonomia w/ #POTS caused by severe long Covid and maybe mild closed TBI’s before last two COVID’s, and have had two near faintings with this despite Mitodrine.

It is hard to not feel anxiety in the face of the Covid-19 outbreak. The information we are getting about the virus is changing all the time and new regulations about where we are allowed to go or who we can see changes just as fast. Governments have been urging people to stay home, with some actually using police enforcement to make sure that people are following the regulations.

Yet, today I still hear about people gathering in places like beaches or keeping their restaurants open despite the rules. And to be honest, it makes me incredibly angry.

My beautiful daughter Daisy was born with Microcephaly, a rare condition that basically translates to small head. There is a wide range of issues that can appear, some being fairly mild to others being very sever.

And Daisy had the sever type. Her brain did not develop in the same way as the rest of us, causing her to have no independent movement, difficulty swallowing and sever developmental delays. She was the love of my life- bringing me incredible amounts of joy, even amidst the difficulties of taking care of her. She was medically fragile- with her difficulty swallowing, her lungs were often affected by bits of food or water going down the wrong tube. When she got a cold, it took a long time for her to recover and every winter season, we stayed close to home as to avoid germs.

But we couldn’t shut down completely and in the winter of 2015, Daisy contracted three different colds in a row, the last one landing her in hospital. She got RSV– Respiratory Syncytial Virus- which is actually very common as most children get it at some point, normally just presenting as a bad cold. But for Daisy, this incredibly common virus, was deadly. After two weeks in the hospital, Daisy passed away on her fourth Birthday- Jan. 3 2016.

Despite our best efforts to keep Daisy safe- the entire family got the flu shot each year- a common virus which passes around schools all over the world, killed my daughter. It was a regular year, with the regular colds and flus going around. But because of my daughter’s medical fragility, she got something that she could not fight and we were forced to say our final goodbyes.

The fact that Daisy probably got this virus from a schoolmate, kills my soul. She loved school and I never would have taken her out just because she could get a cold. BUT, if there was an outbreak of a new unknown virus, I would have been one of the first to isolate. And it would have been hard and I wouldn’t have liked it, but I would have done it.

The problem would be that, I wouldn’t be able to completely cut myself off from the world. My husband would have still gone to work. I would still need to go to the grocery store. And if either of us unknowingly came into contact with a virus, we would have easily passed it on to our baby girl. Hugs and cuddles were big in our family. And is something I long for today.

So, with the news about Covid-19 and the rapid spread, I’ve been thinking a lot about my Daisy girl and what it would have been like if she were still with us. It would have been doubly scary with her here, so though I miss her every second of every day, I am glad I do not have to worry about her safety.

But I do worry about the safety of others. For those who think this virus is no big deal or think that they are healthy so why should they worry- please, please listen when we ask you to stay home. It is not for your safety that we ask this of you. It is for the safety of those who will not survive if they are infected. Just because you do not think you’ll be affected by this virus doesn’t mean that you cannot spread the germs to people who would. We shop at the same grocery stores; we go to the same pharmacies. So, I beg you, if you are able to stay home- STAY HOME! If not for you, then for Daisy.

COVID-19: Use Your Head and Your Heart

As a former ER nurse, I can assure you that I do not have an irrational fear of germs. As a mother I have always avoided over-sanitization because I recognize that exposure to mild pathogens helps the body develop a healthy immune response. (If my children were immunocompromised I would be singing a different tune.) Living under a perfectly-disinfected rock does more harm than good! Generally speaking, I am fairly relaxed about bacteria and viruses and their transmission.

I am also a mental health warrior; I have battled Anxiety & PTSD for most of my life. I am incredibly high-functioning, at least on the surface, so most people – aside from my family and close friends – are completely blind to my struggles. Does that mean my problems aren’t real? Absolutely not! It simply demonstrates that outward appearances are a poor method for evaluating the experiences of others.

COVID-19: Those at Low-Risk

As far as I am aware, my immune system is functioning adequately. If I were to contract

COVID-19 I would likely recover without facing severe complications or hospitalization. I am 31 years old, I do not have high blood pressure, diabetesor a clotting disorder. I am not receiving any kind of immunosuppression therapy. I also live in Ohio – the state that has effectively set the standard for all efforts to flatten the curve. For these things I am grateful!

Children also demonstrate remarkable resilience in the face of the COVID-19. Yes, kids have died from it, but some degree of mortality is to be expected with any virus that reaches this degree of prevalence. As a parent who has lived through a nail-biting PICU stay when our newborn twins contracted RSV, however, I can tell you that my Anxiety about COVID-19 does not primarily revolve around concerns for my immediate family.

COVID-19: The Vulnerable

According to the Centers for Disease Control and Prevention (CDC 2020) those with preexisting medical conditions such as lung disease, diabetes & heart disease are especially prone to developing severe illness when exposed to COVID-19. Advanced age, and the physiologic and immune changes that accompany it, is a characteristic of a significant percentage of those who lose their lives to this virus.

Immune Systems: Don’t Judge a Book by the Cover

While factors such as age may be visible to the naked eye, the vast majority of conditions that cause impaired immune responses are invisible to the naked eye. Rheumatological conditions such as lupus, rheumatoid arthritis and ankylosing spondylitis may appear “normal” to those who pass them in the street. Their physical presentation does not negate years of steroid usage and other treatments used to suppress inappropriate immune responses.

Asthma and other types of lung disease can also be subtle during when they are under control. Being functional in day-to-day life does not mean that a person’s lungs are equipped to handle the blow of severe respiratory illness! While children may not be at increased risk, those with underlying conditions are still less likely to bounce back from COVID-19.

Organ transplant recipients and those receiving cancer treatment may not appear sickly – but that does not mean they are not at a significant disadvantage during a pandemic. Heart disease, often a silent killer, and diabetes cannot be detected and evaluated with a single glance. You simply do not know what risk factors are causing others to be fearful.

Some of Us are not Ready to Say Goodbye – Again

I am a stillbirth survivor. After losing our son last September I became acutely aware of the brevity and instability of human life. My heart was broken. After months of grieving and soul-searching I gained a deeper appreciation of the time we are given.

Many of the people that I love, whom I feel blessed to still have in my life, fall into these high-risk categories. My mother, who has lupus and other chronic health issues, has been on immunosuppressants for over 30 years. My grandmother, who lives the healthiest lifestyle of anyone I have ever heard of – never touched a cigarette, had a drop of alcohol or even eaten a bite of meat – falls into several of the highest risk categories. She has congestive heart failure, COPD and is chronically anemic, on top of being elderly. My husband’s grandmother, who has diabetes and heart disease, recently started chemotherapy for brain cancer.

I am strong, but I am not ready to attend another funeral for a person that I love – especially if there are measures that can be taken to reduce the risk of exposure. I know that I am not the only “healthy” person who feels this way.

Use Your Head and Your Heart

Buying into the hysteria won’t make things better, but neither will belittling the concerns of others. Before you judge someone else’s reaction to the COVID-19 pandemic, take a moment to think about all the things you can’t see from their perspective.

Anxiety, depression and a host of other mental health issues can magnify the intensity of a person’s response to this outbreak.

This does not invalidate the way that they feel.

Someone may be worried for the same reasons I am: they care about the lives of others who might not survive.

It is 100% okay to care about other people; in fact, this is a good thing!

They may have a condition, or several, of which you happen to be unaware.

That is not your business – they do not need to justify their concerns.

They may be a healthcare worker who fears that wartime triage protocols could become a reality here.

Be grateful for those who are on the front lines fighting this pandemic.

Takeaways

Whether you are as cool as a cucumber, or on the verge of a mental health crisis, you still have the ability to make a positive impact.

If you feel the need to share information on social media – stick to facts and useful information. Avoid making sweeping, sensational statements that may come across as harsh, condescending or dismissive. Knowledge is power, and you can help empower others by setting a good example.

If you are clearing the shelves of supplies at the store, take the time to make some care packages for those who truly shouldn’t be leaving the house. Use your stockpile to put together toilet paper, hand sanitizer & basic groceries – then leave them on the doorstep for elderly and disabled members of your community. (But please, don’t ring the doorbell and expose them to any germs you might have!)

If you have baby wipes, diapers, formula or other supplies that your child no longer uses: pack them up and send them to a family who has an infant dealing with chronic health issues, or give them to your neighbor who has a newborn and is afraid to risk the crowds.

If you are going stir crazy and home with your kids – take a moment to be grateful. Appreciate the roof over your head, the time you are spending with your family and be thankful that you are all in good enough health to be there. Yes, there will be chaos (and shouting and tears) but realize that you are protecting the most vulnerable lives by practicing social distancing.

Everything is overwhelming right now. New information is flooding in on a daily basis. Recommendations and advice will change. Watching the news may be frightening. No matter what your emotional response is right now – you can still be a good person.

References:

www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-...

www.cdc.gov/coronavirus/2019-ncov/cases-updates/summary.html