Living Breathless
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My Sjogren’s Story

Sjogren's Syndrome is an autoimmune disorder in which the body's white blood cells attach moisture producing glands, most commonly in the eyes and mouth. But it can have more serious complications and be hard to diagnose.

Sjogren’s Syndrome is an autoimmune disorder in which the body’s white blood cells attack moisture-producing glands, most commonly in the eyes and mouth. But it can have more serious complications – like attacking your lungs and landing you on oxygen therapy.

I’m not one to jump on bandwagon decorated with colored ribbons, or start plastering social media with awareness campaigns. Usually, I’m of the opinion that all the ribbons and campaigns and marches and walks and fundraisers do less to raise awareness of something and more to annoy me. Don’t get me wrong, I think the intentions behind these efforts are fantastic. I just get inundated with them and therefore tune them out, making the entire point of an “awareness campaign” moot. But I digress. I’m going to make an exception and pay attention to at least one of these campaigns. April is Sjogren’s awareness month.

“Sho-what?” you might say. Don’t worry. I said the same thing when I was diagnosed.

SHOW-grins Syndrome is an autoimmune disorder typically characterized by dry eyes and dry mouth. Seems pretty innocuous, right? Dry eyes? No big deal! Get some drops. Dry mouth? No sweat! Just keep a bottle of water handy. At its most basic level, Sjogren’s seems like something that is more annoying than anything else — and that’s exactly how my rheumatologist described it to me.

The problem with this disorder is there are dangers underlying those seemingly simple symptoms and there are other, more serious symptoms that can develop. It is hard to diagnose because it can affect the body in so many different ways. It is hard to understand because it affects everyone who has it differently.

Take me, for instance. I struggled with dry eyes for 15 years, always blaming contact abuse. These dry eyes make me susceptible to eye infections and make it difficult for me to wear contacts. Definitely a first world problem, but one that drives me absolutely crazy in the summertime. Sweat + glasses + Cassie = One Angry Woman.

But then take the dry mouth. Did you know that the saliva in your mouth houses bacteria that helps prevent cavities? I didn’t until a few months ago. When you don’t have enough saliva – as you won’t when your immune system attacks your saliva glands – you are more prone to cavities. So it makes keeping your regular cleanings very important and guarantees that you better save up for dental bills, because they are coming for you. Again, not the end of the world, especially when you are fortunate enough to have easy access to good dental care and insurance to help cover the costs.

Let’s dig a little deeper. We’ll look at me again. Sjogren’s causes white blood cells to attack moisture-producing glands. Simply put, a body is attacking itself. Can you guess where else there are moisture-producing glands?

In your lungs! In my case, my immune system saw these two big things collecting air and said, “What the heck? These shouldn’t be here!” and went into full-scale attack. This led to a hacking cough that I ignored for months until I literally couldn’t breath anymore. Thanks to Sjogren’s – and my own stubbornness – I’m five months past being diagnosed and still on oxygen. I’m not sure if I will ever be able to completely stop using it. But still, I am far from the worst case.

In the early days of my diagnosis I did a lot of reading. My rheumatologist told me not to; he said it would unnecessarily terrify me. I fought the urge for weeks, but finally gave in. I was curious about this assault my body was leading on itself. I learned Sjogren’s can also attack your kidneys and that people who have it usually have other autoimmune disorders. (Thankfully, I do not.) Beyond just the medical information, I found some bloggers who also have Sjogren’s. That’s really what got me.

So many of these others – mostly women – had only terrible things to say. Their doctors were terrible, their medicines made them more sick or didn’t work at all, they dealt with debilitating pain every day, things they loved were being taken away from them one by one … the list goes on. Around the same time I was reading all these blogs, I was hearing from my doctors that I may never be off oxygen. That’s devastating news to a 29 year old with dreams of travelling the world.

My own struggle with self-pity was being compounded by everything I was reading. So I stopped. I don’t want to sound like I’m criticizing any of the bloggers I read – far from it. Its a brave thing to relive your own struggle and heartache for the sake of helping others. It took me months to be able to put my own story into words and come back to this blog. But only reading about the negative aspects of the disease and rarely reading anything other than complaints about how this has negatively impacted their lives was only pushing me further into a dark place. I was beginning to feel like I was alone and my life was over.

People talk about dealing with isolation when you have Sjogren’s. You can’t see pain, so friends and family do not understand why sufferers don’t come around as much anymore. I am so lucky, or blessed, or whatever you want to call it, not to have experienced that. I have friends and family who are understanding and accommodating. They beg me to come out, but understand when I don’t. They tell me if they have had so much as a sniffle in the last month, and ask me before getting in my face because they know that with me taking medicine to suppress my immune system, even catching a run-of-the-mill cold could be bad news for me.

So the “typical” isolation people have when they deal with a chronic illness wasn’t my problem – I isolated myself from everyone because I was afraid. I was afraid to catch another cold, or worse: the flu. I was afraid I would hold someone back because I couldn’t get around easily. I was afraid of the looks of disquiet on my family member’s faces when they realized how sick I was. I could see the firm set of their mouths every time I gasped for air just from trying to tell the story of the time I almost fell flat on my face. I could see the worry lines deepen with every cough.

But what I was most afraid of were the looks of complete pity. You see it in their eyes – that look that says “I’m sorry your life is over. You are so young. So full of life. And it has all been taken away.”  But guess what?

MY LIFE ISN’T OVER. Nothing has been taken away from  me. Far from it.

I’m living my life with a chronic illness and its annoying. But that’s it. I have to plan ahead to make sure I have enough oxygen to get me through whatever activity I have planned. When I go hiking, I have to stop to rest and catch my breath – A LOT. I make sure I’m not intentionally subjecting myself to germs, but I push myself to get out, exercise and just DO THINGS. Basically, I’m just living life the way I normally would, just with Gus, my trusty oxygen tank, at my side.  And every time I push myself, it gets a little easier.

Here’s the moral of my story: Sjogren’s deserves to be taken seriously, but its not the end of life. Its just a different way of living.

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This entry was posted in: Living Breathless

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I’m something you don’t see every day: A person under 80 who walks around with oxygen everywhere she goes. I have Sjogren's Syndrome, an autoimmune disorder which, with the help of my stubborn refusal to go to the doctor, caused some pretty deep damage to my lungs. My lack of breath slowed me down for a while, but I'm back to adventuring - just with Gus, my little oxygen tank, in tow. This year's goal is to complete the 52 Hike Challenge and get myself into a healthier state of being. Join me on my quest to become oxygen free!

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