Continuing the Conversation: Living with Chronic Illness in the Midst of a Global Pandemic

It's been a little over a week since I shared about my struggles in living with a chronic illness during this global pandemic (if you don't know what I'm talking about read it here). To be honest I didn't expect much in the way of a response since the topic of COVID and masks have become an incredibly divisive political issue, which I'm still struggling to understand as other countries have not had this problem, but the response I've gotten has truly been incredible. 

So many people have reached out to me to apologize for the people who have berated me in the middle of grocery stores and farmers markets. People have reached out to apologize for all the people who have made assumptions and tried to get me kicked out of stores for abusing the reserved shopping hour for 60+ and immunocompromised people. While I'm incredibly grateful for all the kind words I think we all need to do better. There's a severe lack of education and understanding for people who suffer from "invisible illnesses." Just because you can't see a disease or a compromised immune system with the naked eye does not mean it's not real. 

This pandemic has brought out the best in people, but it's also brought out the worst in people. Some, not all, have taken on the mindset that it's every man for himself, when in fact this is the time we should be watching out for one another. I think of all the people with hearing loss/problems that rely on reading lips but they cannot do that anymore because everyone has masks on. I think of people with claustrophobia for who wearing a mask feels like it's suffocating them. I think of people who are undergoing cancer treatment that are unable to do their own grocery shopping because it's too dangerous to go out. I think of all the doctors/nurses/hospital staffers who have made the heartbreaking decision to isolate themselves from their families so they don't bring COVID home with them. There are so many battles people are facing right now that we can't see, but that does not make them any less real. Take time to educate yourselves. Check on elderly neighbors to see if they need anything. If a friend or loved one has a condition that puts them at a great risk for COVID call and see how they are or if they need someone to run to the store for them. We need people more than ever, even if we all have to be at a distance. 

Next time you go out be kinder than necessary. Don't make assumptions about people based on what they look like. Offer help where you can, mind your manners- please and thank you go a long way these days, be respectful of other peoples decisions and keep your mouth closed regarding other peoples situations that you know nothing about. 

Chronic illnesses are draining enough- trust me. The last thing anyone with one wants or needs is someone else butting into their medical illnesses/conditions that you know nothing about.

Be kind and keep your mouth closed. 

Living with Chronic Illness in the Midst of a Global Pandemic

I've been trying to write this for two months now and every time I sit down to write I'm left wondering, "How do I even put it into words?" Honestly quarantine has been a rollercoaster of emotions. There's been moments of pure joy and happiness, but there's also been a lot of really lonely moments.

Having a chronic illness before COVID was already challenging and often very lonely, but COVID has amplified the struggle 100x. I can't even begin to tell you the number of people who have told me, "COVID isn't real," or, "It's a government conspiracy." I'm not here to debate your thoughts on the issue, I'm simply here to say people with chronic illness are struggling IMMENSELY now. How do I know this? Because I am one of those people. 

As a 20-something year old with Lupus, a chronic autoimmune disease, I was already living a life drastically different from my peers. Chronic pain, extreme fatigue, brain fog, and a plethora of other symptoms consume most of my days. Symptoms come and go depending on the day, the weather, the amount of sleep I have (or haven't) gotten. In many ways my body is not my own. This disease owns my body, doing with it what it wants, leaving me to deal with the aftermath. At times it's a very lonely existence because very few of my friends understand what it's like to cope with a chronic illness as a 20-something year old. 

When COVID cases started tallying up across the country I knew this was something we I wouldn't be able to ignore. In the span of a few weeks I went from getting up, working out, and going to work, to staying at home 24/7. I'm very blessed to be able to work from home, it's a privilege I know many in this country and around the world have not been blessed with. While I consider myself both and introvert and an extrovert suddenly the lack of people to talk and interact with on any given day was difficult. I also struggled without the consistency of a routine.

By mid-March I had finally nailed a routine down of waking up, working out, and then getting to work. It's the same routine I'm following today and will follow for who knows how long. My boss has been wonderfully supportive in letting me work from home and understanding my risk factors.

But it's not easy. Where we live no one has taken COVID seriously. People don't wear masks and don't respect social distancing. Also, everyone assumes that because I'm young I'm perfectly healthy. You can't see cancer, you can't see lupus, you can't see a plethora of disease but that does not mean they are not real.

There's a few grocery stores here that have special hours for people who are 60+ and for those with compromised immune systems to shop before they open to the public. Every single time I've gone to those shopping hours, mind you most of them are from 6-8 a.m., I've been berated for being selfish and taking advantage of shopping when I can go during their normal hours and someone ALWAYS tries to get me thrown out because I'm young and perfectly healthy. Several times I've almost left my cart and ran out of the store in tears. I flat out refuse to go to the local farmers market anymore because while we were there during their special shopping hours I was approached and yelled at by a woman who called me a slew of nasty names and tried to get me thrown out. 

I'm sorry but who is anyone to judge someone by how they looks? I am far from perfectly healthy. I basically don't have an immune system, my white blood cell count is in the toilet (white blood cells help fight infection), and I have organs that don't work properly. Not to mention it's a weekly struggle to get the medications I need because the Federal Government is testing them in the fight against COVID, thus making me an even higher risk for COVID. Do I need to wear a shirt that says, "I have an autoimmune disease and lack the ability to fight infection. COVID could kill me." 

COVID is not a joke for people with chronic illness. I don't care how you feel about masks or what your thoughts on the matter are. If someone you loved had a chronic illness and you knew that COVID could kill them wouldn't you do everything in your power to keep them healthy? I know I would. I've stopped going to the grocery stores and the only time we leave our home is to pick up a grocery order, to run or walk in our neighborhood, or to take the dogs to the dog park at hours when others are not there. We don't go anywhere else because I'm tired of being yelled at. 

The simple fact of the matter is COVID could kill me. My body does not have the ability to fight any virus let alone COVID. How do you think I feel telling my husband that in the event I do contract COVID please do not let them put me on a ventilator? I know my chances of survival are basically zero so I don't want the fight to drag on for weeks or months. It's gut wrenching but this is my reality. 

I stay home because I want to live. I want to see my husband accomplish all his career goals, I want to see my baby nephew grow up and get married, I want to see my dogs run around like nuts in the yard, I want to purchase a home, I want to hug my parents without fear. There are so many things I want to do but I won't see any of it come to fruition if I get COVID. My doctors have made it very clear that wearing masks saves lives. Put yourself in my place. If you knew getting COVID was a death sentence you'd wear a mask. The CDC has made it clear that if 80% of the population wore masks we could be done with COVID in 2-3 months. I wear a mask because I want to live.

Regardless of how you feel about the matter please try putting yourself in my shoes. Everyone wants life to return to normal ASAP, but it takes all of us working together to make that happen.

Life Updates: Moving, Quarantine, Protests (Thinking Out Loud #130)

Happy Thursday and happy June! I'm a little late to the party as it's already more than halfway through June. I've struggled to write these past few months so I've stayed away. Please understand that the struggle is not because I have nothing to say, in fact it's quite the opposite. I've had lots of things I've wanted to say just no matter how I tried to write them it never sounded quite right. I'm going to try to have it make sense this time so bear with me. Let's just jump in to this life update/thinking out loud.

1. This was part of the devotional that the hubs and I were reading yesterday and it really struck a chord with me. The devotional is on the YouVersion app and it's called Tony Evans Explores Racial Reconciliation. For me the words were a breath of fresh air because so few people are willing to go out on a limb and call racism what it is- SIN. Whether we want to admit it or not we've all be guilty of being racist. There are so many layers to racism, but I firmly believe racism is taught. No one is inherently racist. Think about your family, your friends, your coworkers. How diverse are the people you hang around? Most of us hang around with people who are like us even if we don't consciously think about it. Go learn what minorities go through in our country. Listen to their stories, read their books, and learn. Have hard conversation with your friends and family. I know my husband and I have had some very hard conversations in recent weeks. We want to learn, we want to do better. Racism is sin and there is no justifying sin in God's eyes. Change is hard, but change is also necessary. 

2. On a little bit lighter of a note the hubs and I celebrated one year of marriage on June 8th. It seems like the year has flown by, but it also feels like it's been the longest year ever. Nevertheless I'm very thankful to have spent the past year learning and growing with this amazing man. And no we will not be having kids, please stop asking. 

3. A few weeks before our first anniversary we moved into a house. We're renting not buying as we planned to leave NE but COVID happened and everything was put on hold for a year. On the bright side we have a yard for the dogs and a little bit more space than what we had in our apartment. Zeke discovered the joys of sprinklers yet we purchased him a $50 doggie pool on Amazon since he loves the water but he has no interest in it, sigh.

4. Ginger is loving having some extra space to play and nap in. We have a basement which we've turned into a home office for me and a gym since the gyms are still closed. Every morning Ginger comes down to workout with me and flops over on her back. She's always so excited until she realizes I'm going to workout, which she promptly rolls over and takes a nap 😂 At least she's willing to keep me company.

5. It's no secret that I love some good tacos. I love tacos even more when they're 99 cents. NE friends if you're looking for a great deal on tacos on Thursdays Meztil in Lincoln has 99 cent tacos. You have to call and order early because they are insanely busy! We drove twenty minutes last week to pick up our 99 cent tacos, but it was so worth it!

6. The dogs have been doing really good since we moved. Zeke can be left out of his crate during the day when we work, even though now I'm home, but he recently figured out how to spider monkey up onto our kitchen island. Our living room is a lot smaller than what we had before so we had to push a chair up against the backside of the island. Well Zeke figured out he can climb onto the back of the chair and onto the kitchen island. Lord have mercy I swear this dog will be the death of me. He has no fears and discipline has no effect on him. My mother says it's paybacks for my teenage years.

Normally I'd say I'll try to post more often but I really have not decided what I'm going to do with this space yet. I don't know if I want to blog still as it's been awhile since I've shared a recipe. For now I'm going to keep working, keep learning, and keep having the hard conversations. Have a great Thursday and rest of your week!