I Have a Sjögren's Diagnosis and I'm Lucky

Daava’s Story

"I'm lucky." That's what I told Liz at Folia a couple of weeks ago. We were discussing how I got my Sjögren's Syndrome (soon to be called Sjögren's Disease) diagnosis. I'm in HR, I hate the word "lucky" with a passion. I hate that I am a woman using the word "lucky" to describe my circumstances. But here we are. Here are ten things that make me lucky. 

  1. I'm lucky because I have an amazing doctor who listens to me. With all the news about medical gaslighting, women and minorities suffering in silence, and having worse outcomes than white men, less care, etc, my doctor has been nothing short of amazing. He's a Physician's Assistant, he heard me, and he acted when I started saying over two years ago that something is wrong. It took three annual visits over two years, and when things weren't changing for the better he requested a battery of blood work. Never once did he get on me about weight gain. Yeah, that took a bit. My symptoms weren't as obvious as a lot of people's. I'm lucky my doctor believed me.

  2. I'm lucky because my blood work actually showed something on the ANA. Not all people with autoimmune issues have conclusive information from the first round of blood work. Many people dealing with these unknown issues are largely ignored because the blood work doesn't prove anything. I have a friend who has changed her diet, lost a bunch of weight, and still has classic Sjögrens symptoms. The doctors told her that it was menopause, and her dry mouth and dry throat will rebalance when her hormones rebalance. They offered nothing for her in the interim, because her blood work doesn't prove anything. No meds to make her comfortable, just "you're getting old dear." No one needs to hear that. I'm lucky my body is a tattle-tale.

  3. I'm lucky that four of my closest friends have been diagnosed with connective tissue diseases. How is that lucky??? Okay, it's validating when I'm knee-deep in insurance squabbles with lying medical office managers, to find out that it also happened to a friend. I can reach out and ask them what is working with their medication and pain management plans. I have been given amazing guidance on how to navigate food in a restaurant. And sometimes it's just nice to know I'm not screaming into a void, although Reddit has some great subs to scream into if you need to. It was one of these amazing friends who told me to read up on Sjögren's. Up until that point, I didn't realize I had a dry mouth caused by non-performing salivary glands, I just thought I was thirsty. I thought I was emotionally broken. Nope, I just don't produce tears anymore. I'm lucky to have wise friends.

  4. I'm lucky because three of my above-mentioned friends are moms. If you're a mom with an autoimmune issue, you just know how vital that is. Just making a cookie that everyone can eat (by the way, one of my triggers is cane sugar) is a win. I am constantly amazed by their strength, energy, and how they just dig in to get the next thing done. How they respect their bodies and connect with their children. They also support me when I just need to lie down for four hours and tune everyone out due to a flare. When I grow up, I want to be the same kind of mom my friends are to their kids. I'm lucky to have them as role models.

  5. I'm lucky because when I was freaking out that a SYMPTOM of Sjögren's is Lymphoma, one of my besties who is a Reiki Master held space for me to freak out about my swollen glands. Say what you want about woo-woo healing; meditation and mindfulness are strong medicines. It shows up for people differently. I go deep into myself, and really see what the moment is connected to. Having a sage friend is lucky, of course, that friend will tell you it's a spiritual alignment, or the universe showing up for you. I guess that's the definition of luck. If so, sign me up, Universe! I'm lucky to have someone who loves so deeply she actually plans time in her day to send me healing thoughts and energies. Not some fly-by-night "thoughts and prayers." I'm lucky to have spiritual encouragement.

  6. I'm lucky because I responded to the first medication prescribed. I'm highly sensitive to medications and allergic to a few. First try, first dosage, they work at the "normal" amount, they don't need to be dialed back, and they didn't give me a rash. If I miss a dose, I can tell. I'm lucky I can have common medications, and one's generic version cost is less than my co-pay. I happily pay $10.97 per month to keep my body from attacking itself. The one that helps me produce saliva is my full co-pay, and it's worth every freaking cent. I'm also lucky my insurance plan has a $750.00 deductible. That's super rare these days, and I don't take that for granted. 

  7. I'm lucky because it's taken less than 6 months to identify many food triggers. Doctors will tell you this can be done in 30 days, but people within the autoimmune community report a minimum of 90 days, probably more, to just scratch the surface of food triggers. I just identified another one a few days ago. But you know what? I'm lucky that my body "screams" at me so viciously these days. I've developed trust with this meat vehicle that has to keep me on this earth and ensures that I take care of my daughter. It's reminding me that this is simply a corrective maintenance process. Now I can focus more on preventative maintenance and dietary lock-out-tag-out. I'm lucky that I have two-way respect with my body.

  8. I'm lucky because I have a supportive partner who gladly goes with the flow, especially on the food side of things. He has quickly developed a keen ability to support me when a flare happens. It generally involves a dark room, water, and me cuddling with my Manchester Terrier. The dog is beside himself when a flare starts in my body, often 30 minutes prior he becomes a desperate cuddle monster, I'm lucky my dog takes care of me in this way. My partner makes sure my tween has dinner or gets to school, he'll drive me somewhere if I'm dizzy from a small flare. He encourages rest, and he's become a darn good cook with my wack-a-doo ingredient lists. I'm lucky that I have a partner and a dog who love me unconditionally.

  9. I'm lucky because all my medical professionals are gentle and thorough. They take extra time to explain to me what I need to know. I've learned some wild things. I can no longer just ignore a sore throat, or any mild symptom of sickness. I have to be evaluated and put on an anti-viral immediately, sometimes even take preventative antibiotics. I'm lucky to have a private Urgent Care near my house that takes my insurance with some solid NPs, MDs, and PAs on staff. I have a friend who is a naturopathic doctor, her husband runs her supplement business, and he's helped me research and review what will work with my unique needs. Each doctor has completely supported and recommended natural remedies in conjunction with my meds as well. I'm lucky I can afford the multiple supplements I take daily, and I'm lucky that he gave me the friends and family discount!

  10. I'm lucky because my daughter finds ways to get me to be physically active with her a few days a week. Sometimes I don't feel like I have the energy, but I always feel better after, and I am not drained the next day. "Just Dance Now" for the win! LMK if you want my room code. Anytime you can get connection and activity in, it's gonna raise oxytocin levels. We all need more oxytocin in our lives. I'm lucky my daughter drives this, and I'm lucky that she is an empath.

Thinking about all the things that make me lucky helps me realize that I can use this to create a connected life, create boundaries, and really focus on the people I want around me. This is forcing me to be a healthier version of me. My energy no longer allows me to spend energy where energy is not returned to me. Maybe the Universe is trying to have a word with me, telling me where to spend my time. Maybe the Universe is masked as Luck. 

So, I'm lucky.

All the best, 

Daava Mills

You can find a bit of Daava's previous work at Mills Group LLC and LinkedIn. She is in the midst of developing a consulting practice to help those with autoimmune issues navigate work with accommodations, home life, spiritual fulfillment, and other bite-sized pieces that make life easier. 

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