Chronic Conditions, Disability/Handicap, Family, Health

Muddling Through Covid As a Big Happy Family

It is not lost on us, the irony of this crazy respiratory sickness scaring the crap out of everyone. Especially since it was right on the back of mom getting out of the hospital from her latest lung exacerbation. What do you do though? We all have to figure out how to function in this mess, and to be honest we were already germex-ing and lysoling everything. Also practicing “social distancing” to try and limit the amount of times the kids sneezed in Nana’s face.

For us the biggest changes have been the fact that the kids are home all the time, I am staying home from work, and I am doing the grocery shopping for 3 households in 1 trip. We are doing our part to reduce the spread of the dreaded corona virus because we understand the consequences if it hits the medical system hard and fast.

Yes we have taken a financial hit like most, but we won’t lose our house either. Boy wouldn’t it be nice if they could figure out this stimulus. It would certainly reduce many people’s stress and that in turn increases their immunity!

Anyway mom did decide to change the appointment time for her IV infusion. We decided it was best to go earlier in the day, on a day that isn’t as busy. She has Alpha 1 Antitrypsin Deficiency. This is a genetic condition that means she doesn’t have enough of a specific enzyme in her blood, so her lungs are likely to inflame and her liver is at risk.

If they had found out about the condition 20 years ago her lungs would be in a lot better shape. That isn’t what happened but our family can certainly appreciate the advancements that have come out of genetic testing. There are benefits and downsides to every scientific endeavor.

In short mom is on oxygen and still struggles to breath, especially during certain seasons. Yes the kids or I might get this condition someday. We have not been tested yet but I am aware and keep an eye out for the symptoms. It’s a good thing all my immediate family quit smoking over a decade ago, and getting closer to 2 decades now!

Unfortunately for mom she also had a heart condition and although a drug called amiodarone saved her life, it did cause fibrosis (scar tissue) in her lungs. Life is not always kind but it did inspire our family to take stock of our lives and make many small and large changes to improve our overall health.

Obviously the corona virus would be devastating to mom with her conditions, and it probably wouldn’t be so great for the rest of us either. My baby bro has Crohn’s disease, which is another of the underlying conditions that mixed with Covid may have extreme and potentially deadly effects. Personally I would love to avoid any of my family getting sick if at all possible, and I have really appreciated the steps I see people taking to reduce the corona virus’ impact on the US (and Pennsylvania in particular).

So I dropped off mom at the hospital this morning. She wore a mask to go in and they wouldn’t have let me go in with her if I tried. Which I didn’t. Then I dropped off my brother for his IV infusion when I went to pick up mom . We forgot to provide him with a mask for while he was there, but were happy to hear they are seating people apart (6 feet or more) at the infusion center.

When I went to pick him up later he opened the car door, sat his books down, and used his sanitizer before he got in the car. I assume this is a habit he picked up from riding along with my mom. I went into the post office to get mail, and used his germex before I started driving. Also every single time I came home today I washed my hands immediately upon entering.

These are the small ways in which everyone can contribute to the health of the nation. OK so maybe you don’t think your family is at risk if they catch it. What if you already have it or have had it? My kids and I fall into the category that may only show mild symptoms. If we didn’t get a fever we could potentially just think it was allergies.

By practicing small hygienic habits we are less likely to get the virus and we are less likely to give it to someone else. My family has developed these habits over time because of my mom’s illnesses and having our small children around. It always seems like one of my kids is brewing a “bug”, so we are very careful to keep the spread of germs at a minimum.

When corona showed up here we went on high alert. I had gone home sick from work the 1st week it became big news in our area. We kept our kids on our side of the house, away from mom, for more than a week and a half just to be safe. We video call with the children from our side of the house to stay in contact, but to reduce the chance of spreading germs. Sadly our kids still cannot be counted on to not sneeze in her face.

So yesterday the baby had stood at the door to her “suite” and said “Nana, Nana, Nana and I took her over for a big snuggle. Since mom was chatting on the phone, I waited until after dinner and sent the big kids to give her big hugs. It’s a weird life but it’s still good.

Thank You to the Medical Establishment!

I know you guys are working hard and taking a lot of heat at the moment. When we went to the hospital today they had medical staff screening everyone at the hospital entrances. This means that everyone goes to the correct place and that no unnecessary germs are entering the hospital environment.

I absolutely understand why this is a pain point for everyone. Yes I saw a lady have to wait a few extra minutes while the staff made a call back to the infusion center. Her husband was finished with his infusion and someone needed to push him out in his wheelchair. I don’t know whether the staff pushed him out or if she was allowed to enter but I’m sure he was taken care of. Yes the extra communication and wait time is a pain but we can feel reasonably safe at the hospital, without worrying that every darn thing is contaminated with a ticking time bomb.

I know that many people don’t have to have this level of worry about this virus. Only 5% of people seem to be tragically affected. Those of us with “at risk” family members do truly appreciate all of the extra processes that are going into to keep people healthy.

On this note I do want to point out that if everyone in the medical staff gets sick at the same time we are all “at risk” of not receiving emergency services. So even if you aren’t at risk and don’t know anyone who is at risk, I still urge you to take this seriously.

If you are in a car accident and there isn’t enough healthy emergency staff to save your butt, it’s too bad so sad for you. Yes I realize the odds of this happening is very small, and that this statement will probably not convince any 20 somethings that they aren’t “bullet proof”, but I still want to encourage everyone to stay home if at all possible. A car accident is only one of the reasons people go to the ER and we want as many healthy staffers there as possible to address any and all emergencies!

Something else to consider is that though a majority of people in their twenties and thirties still look pretty healthy, they just haven’t discovered their underlying conditions yet. I would recommend against playing virus’ roulette with friends and family, you just don’t know who will be impacted and in what way.

Now that I have totally doom and “gloomed” everyone to pieces, I do want to say that I have hope that this experience may have an upside. For the first time in a long time many people have been able to slow down enough to take stock of their lives and connect with their families. The air has literally cleared due to the reduction in production.

I have spent more time with my kids than I have in years, for better or for worse lol. I can tell you it has absolutely made me appreciate teachers more and the fact that many kids at school receive 2 meals a day outside of the house!

We don’t know what the world is going to look like coming out of this mess but what I can tell you is don’t lose hope. For every disaster I have lived through, I can look back and see lessons learned and opportunities that wouldn’t have manifested otherwise. We all become stronger and more compassionate when we are thankful for our experiences. Yes I know, no one is feeling very thankful right now but trusting that there is a message and meaning in these events will help us all from feeling despair.

7For we walk by faith, not by sight. We don’t know what is going to happen but we should all go forward spreading as much joy, kindness, and love as we have to give. Jump off that hamster wheel for a moment and let your life slow down a little.

Wouldn’t it be great if we could all find the space to learn what this moment is trying to teach us? I hope that all of you are able to avoid this illness and that the warm weather magically makes this virus disappear. As with all my wishes they are rarely granted, so at this point I am just doing my part to “flatten the curve”.

Take care everyone. Stay safe and germ free!

Signing off,


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