Sjogren’s Syndrome – Autoimmune Warrior

Getting COVID-19 with an Autoimmune Disease: My Experience

Hey all! It’s been a while since I last wrote a blog post. And the reason for that is…after 2.5 years of this pandemic and being fully vaccinated, I finally got COVID-19.

Getting COVID was one of my worst fears during this pandemic. As someone with an autoimmune condition, I wasn’t sure how my body would react to getting the virus. I had read stories, such as this young woman with an autoimmune condition, who had caught COVID and ended up having to get a lung transplant. It’s really scary since some people report that their symptoms are more of a bad flu, while others end up with crippling long COVID symptoms or worse, end up passing away.

It’s been a few weeks since I first tested positive, and I’m on the mend. My main symptoms were a fever, chills, sore throat, dry cough, loss of taste and smell, fatigue, joint pain, muscle soreness and weakness. As you can imagine, it wasn’t a fun recovery!

My only symptom now, a few weeks post-COVID diagnosis, is a lingering dry cough. I have asthma, and although it’s a very mild form of asthma, it definitely flared up when I got COVID.

I wanted to share some of the things that helped me recover from COVID-19 quickly when you have a compromised immune system. Of course, always talk with your doctor before beginning any kind of treatment plan or modifying your health regiment.

1. Anti-viral medication

The first thing that helped me recover from COVID more quickly was getting on anti-viral medication. The medication, called paxlovid, was developed by Pfizer and is composed of two separate medications: nirmatrelvir and ritonavir. The medication is taken orally as six pills swallowed daily – three in the morning, and three at night.

Paxlovid isn’t available to just anyone, however. You have to be at high risk for severe disease if you get COVID-19. As someone with an autoimmune condition and asthma, I definitely fit that category. I was able to get a last-minute telehealth appointment with a family doctor, and he prescribed me paxlovid, as well as some prescription cough medication.

A clinical trial showed that taking paxlovid resulted in an 89% reduction in the risk of hospitalization and death. So, if you get COVID and you’re immunocompromised in some way, I would definitely talk to your doctor to see if you can get a prescription for paxlovid or another anti-viral medication to help you recover faster.

2. Heating/Cooling Pad

Another item that really helped me recover from COVID was a lavender heating and cooling pad. I’ve talked about using a lavender heating pad in the past on this blog for general muscle aches and joint pains, but it was definitely helpful in recovering from the virus as well.

For example, when I was running a low-grade fever, I was able to put the pad in the freezer to turn it into a cooling pad, helping me cool down when I was running hot at night. When I had bad muscle aches and joint pains, I would heat up the pad in the microwave and within a minute, I was able to get some relief.

There are many inexpensive heating pads that you can find online – for example, I found this lavender heating pad from Amazon for only $12.99. You can obviously get an unscented version if you prefer, but I do enjoy the floral aroma.

3. Humidifier

As someone with Sjogren’s syndrome, having a humidifier is always a good bet, since it makes the air feel less dry and helps moisturize your immediate environment. That being said, it also helped me to feel more comfortable when sick with the virus, since COVID gave me a bad dry cough as well, not to mention I had a flare up in many of my Sjogren’s syndrome symptoms, like eye, mouth, and skin dryness.

The humidifier I use is from the brand Crane, but you can find various humidifiers online in different styles and sizes that will fit your space best.

4. Throat Spray

If you’re like me and you experience a bad sore throat and cough when you’re sick with COVID, then I’d recommend looking into an over-the-counter throat spray to help relieve some of the soreness and discomfort. You can get throat sprays with a numbing agent, like phenol or lidocaine, at most major pharmacies. I ended up picking up this cherry-flavored throat spray from CVS, and it definitely helped me get through some of my worse days.

If you’re looking for more of a natural throat spray, you can try an echinacea throat spray such as this one on Amazon for less than $12. Echinacea is a natural compound derived from perennial flowers, and has been used among Native American populations for its healing properties. That being said, echinacea is believed to work by boosting one’s immune system (like Vitamin C), so if you have an autoimmune condition, just be sure to get the go-ahead from your healthcare provider before taking any herb or medication that could increase immune activity.

Those are the items that helped me the most to recover more quickly from COVID-19. Are you someone with an autoimmune disease or other chronic illness who caught the virus? If so, what helped you to recover? Let us know in the comments below!

Autoimmune Disease Sucks…And You Can Handle It

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I’m currently reading the book Diabetes Sucks And You Can Handle It by Dr. Mark Heyman, a psychologist who lives with Type 1 Diabetes (T1D). For those of you who don’t know, T1D is an autoimmune disease in which the immune system destroys the pancreatic cells that produce insulin.

Although I don’t have type 1 diabetes myself, I started reading the book because I work for a continuous glucose monitoring company, which produces medical devices for those with diabetes to help them monitor their glucose levels. Reading about diabetes has given me some insight on what it’s like to live with this challenging chronic illness.

As I was reading Dr. Heyman’s book, I realized that there are a lot of similarities between living with T1D and other autoimmune conditions, like Sjogren’s Syndrome and Hidradenitis Suppurativa, which I live with. Being diagnosed with any kind of chronic health condition can be overwhelming, especially at first. You may think, ‘What did I do to deserve this?’ or other unhelpful thoughts. Even after the initial shock of your diagnosis wears off, there is the ongoing challenge of having to live your ‘new normal’ of life with a disease. It can also impact your ability to do the work and activities that you love.

Dr. Heyman says that the first step to living well with diabetes is to first acknowledge that IT SUCKS. This may seem counterintuitive…after all, if you’re struggling with living with an illness, thinking about how much it sucks would only make things worse, right? But Dr. Heyman says that oftentimes, those with T1D try to ignore their disease, or to think positive thoughts only – this just doesn’t work. You can’t ignore your health problems as if that’ll make them going away. And trying to force yourself to only think positively is basically the definition of toxic positivity.

As Dr. Heyman explains, the best way to live well with diabetes is to acknowledge that although it sucks, you can handle it. Here is a brief excerpt from the boook:

You can handle T1D because you have T1D. I know this sounds like circular logic, but it isn’t. Diabetes is demanding. It requires a lot from you. And you are doing it. You may not be perfect, and it may not feel like you’re doing a great job at handling it. Feeling overwhelmed, and burned out are not signs that you can’t handle T1D. The fact that you’re still living your life and want to keep improving is strong evidence that you can handle the challenging parts of diabetes because that is exactly what you’ve been doing since being diagnosed.

I have never met anyone with T1D who isn’t stronger in some way because of diabetes. You know that managing this condition day in and day out means always being on your toes. You have to make important decisions about your health, pivot your strategy regularly, and keep going, no matter what. You are already doing this.

Sometimes it may feel like you’re not doing a perfect job, and of course, there is always room for improvement. But the reality is T1D has made you stronger. You have to be resilient to survive with diabetes. The fact that you live with T1D proves you are strong. I hope you see it too.

I found this passage to be pretty relatable as someone managing multiple chronic illnesses. You may sometimes feel overburdened by your disease, but at the same time, you are made stronger by the challenges it has put you through. Maybe you’ve also become more conscientious of your health than before you were diagnosed, or it’s led you to re-prioritize your life to make space for only the things that you truly love and care about. Seeing it through this perspective doesn’t mean ignoring how hard it is to live with a disease. Instead, it’s about acknowledging how strong YOU have become in the process of managing life with a disease.

Let us know in the comments below…how has living life with a chronic illness made you stronger or more resilient?

Halsey Shares Sjögren’s, Ehlers-Danlos Diagnosis

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Halsey has shared that she’s been diagnosed with several chronic health conditions. (Photo by Nina Prommer, courtesy of Rolling Stone Magazine)

Halsey recently took to social media to share that she’s been diagnosed with several chronic health conditions.

The Grammy award-winning singer-songwriter, who was recently hospitalized for anaphylaxis — a severe allergic reaction — said that her hospitalization and subsequent doctor’s appointments led to her being diagnosed with several chronic health conditions, including Sjögren’s Syndrome, Ehlers-Danlos syndrome, mast cell activation syndrome, and Postural Orthostatic Tachycardia Syndrome (POTS).

“My health has changed a lot since I got pregnant and gave birth,” the 27-year-old mom-of-one explained. “I started getting really, really, really sick — I’ve been kind of sick most of my adult life, but it started getting really bad [after pregnancy],” she said.

Sjögren’s Syndrome is an autoimmune disease in which the immune system attacks the body’s own exocrine (or moisture-producing) glands. Ehlers-Danlos syndrome is a group of connective tissue disorders that impact the skin, bones, blood vessels, organs, and other tissues. Mast cell activation syndrome occurs when the body releases too much of certain types of chemicals, such as histamines, in the body, resulting in repeated allergic or anaphylaxis episodes. POTS is a blood circulation disorder of the autonomic nervous system.

Halsey has previously shared details about her health struggles, including her battle with endometriosis. Back in 2017, she underwent multiple surgeries to help her with the condition.

She commented, “For those of you who have followed this battle of mine or who may suffer with it yourself, you know the extremes to which it can be mentally exhausting and physically painful.”

Halsey says she won’t let her health conditions stop her from living a full life or having a successful career, however. “If you suffer from chronic pain or a debilitating disease, please know that I have found time to live a crazy, wild, rewarding life AND balance my treatment and I hope so much in my heart that you can too,” she said.