Let's Talk About Hydroxycloroquine

Hydroxycloroquine. Unless you've been living under a rock for the last six months you've undoubtedly heard of the medication. It's been touted as a COVID "wonder drug" by our President and been approached with skepticism by the medical community. Before we get into all that fun, let's chat briefly about the drug's history. 

Hydroxycloroquine (HCQ) was first approved for medical use in 1955 in the United States as anti-malaria drug. It can be used for both the prevention and the treatment of malaria, especially when traveling to areas where malaria is common. HCQ is commonly used to treat rheumatoid arthritis, lupus, and other autoimmune diseases. The drug is generally very well tolerated with mild, if any, side effects they present in nausea, stomach pains, and headache. HCQ is even safe to use while pregnant. People who do use it on a regular basis have to have their eyes checked for a rare eye condition called retinopathy which can lead to blindness. HCQ is only available by prescription. 

More recently HCQ has been making headlines for it's potential to treat COVID-19 as it was used to treat SARS patients and had shown success. The President had touted HCQ as a "miracle drug" before any large scale studies had been done, thus it's impossible to say for certain if HCQ is indeed a treatment for COVID-19 or not. Studies take a lot of time, energy, and money to conduct. For a medical study to be credible other specialists and researchers have to be able to replicate it, but because COVID is a brand new virus there hasn't been enough time to study it let alone find a cure for it. We're still learning about this virus so it's too early to say something is or is not a cure without significant medical research.  

There are people like me who rely on HCQ to function and live our lives in any sort of normal fashion, but when the President started touting how wonderful HCQ was it became nearly impossible to get the medication I (and many others) need. Doctors started prescribing it to themselves, their family members, and friends so the demand for HCQ SKYROCKETED thus making it incredibly difficult, if not impossible for people who need the medication to get it. The pharmacy I go to started seeing perfectly healthy people coming in with prescriptions for HCQ- these were people who did not need the drug but got a prescription from a family member or friend because the President said it worked. I'm not getting into the political issue of it all, I'm just saying look to qualified professionals in the medical field who have years of experience studying infection diseases and helping patients rather than someone who has never been to medical school. 

How does HCQ work? Basically, HCQ helps suppress the body's immune system. The immune system helps fight infections and helps prevent you from getting sick. I have Lupus, an autoimmune disease, so my immune system does not function properly. To better understand how HCQ helps, imagine a normal five-year-old. Now imagine giving that five-year-old Mountain Dew and Pixie Sticks- the kid is going to be bouncing off the walls and there's no attempting to make the child behave with that much sugar in his/her system. The five-year-old on too much sugar is my immune system- it's overactive and it's attacking EVERYTHING (the good cells and the bad cells) which is harming me instead of helping me. HCQ lowers my immune system to try to prevent it from attacking itself- so the HCQ is basically the kid not on that much sugar. HOWEVER, with my immunity lowered I'm more susceptible to infections. Not only am I more susceptible to infections because my immune system is attacking itself, I'm ever more susceptible because HCQ is suppressing my body's ability to fight infection because my body lacks the ability to distinguish between good cells and bad cells, thus I'm an incredibly high risk for contracting and suffering complications from COVID-19. It gets WAY more complicated but I'm trying to keep things relatively simple. 

Not being on HCQ is WAY more harmful to me than being on it. I've been on HCQ for the better part of a decade and the one time a rheumatologist tried to get me off the medication I was worse off than being on the medication. Lupus is a complex disease and I'm on several medications to help control it (there's no cure for lupus), but HCQ is the main drug. Without HCQ the joint pain and immflamuation is so crippling I can't get out of bed because my entire body hurts. It's psychically impossible for me to walk- the swelling in my feet gets so bad even setting my feet down on the floor is so painful I scream in agony. My hands blow up like balloons and I can't bend my fingers. The exhaustion becomes so overwhelming simply walking to the bathroom takes all the energy I have. Let me be clear that HCQ does not eliminate all these symptoms, it doesn't and some days even with HCQ I'm still in crippling pain or too exhausted to move. HCQ helps reduce symptoms along with some of the other medications I'm on. Even on HCQ I've ended up in the emergency room for crippling pain and in the hospital for a week with pancreatitis. Lupus is complicated and so is HCQ. 

I need HCQ to function on a daily basis. Even missing a single dose of it I notice a huge difference in how I feel and my ability to function. If you don't have an autoimmune disease or malaria or are traveling to place where malaria is common you don't need HCQ. 

I totally understand why doctors are trying to use HCQ in the fight against COVID. COVID presents so differently from person to person so maybe it will work for one person and not for another. All I'm asking you is to do your research on where you are getting your information from. Look into a doctors background because it does matter. There's a huge difference in being a family physician and being an infectious disease doctor. Do your research, know where information is coming from, ask questions, and be kind. You have no idea what it's like or how stressful it is to be on HCQ right now and not know if you'll be able to get your medication or not. You have no idea how stressful and scary it is to have an autoimmune disease and be high risk for COVID (I shared a bit about that here). 

I'm not going to pretend to know everything because I don't, but I do know HCQ very well after having been on it for so long, reading countless books and studies about it, and having pestered my doctors with thousands of questions. 

If you'd like to learn more about HCQ here are some resources: 

https://www.accessdata.fda.gov/drugsatfda_docs/label/2017/009768s037s045s047lbl.pdf

https://www.fda.gov/drugs/drug-safety-and-availability/fda-cautions-against-use-hydroxychloroquine-or-chloroquine-covid-19-outside-hospital-setting-or

https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Treatments/Hydroxychloroquine-Plaquenil

https://www.fda.gov/media/138945/download

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.