Dry eyes, dry mouth, fatigue, brain fog, tooth decay, joint pain, numbness…This is Sjogren’s. About 7 years ago, I was diagnosed with Sjogren’s Syndrome, which is an autoimmune disease closely related to Rheumatoid Arthritis.
I had never shared this publicly, until I shared a post about it on Instagram earlier this year.
My symptoms have become increasingly more noticeable over the past year, so I decided to share here in hopes to learn more about this disease by connecting with others, and to share what I do / I am doing to feel better via natural remedies and such.
One of the craziest things about living with Sjogren’s, is that on the outside I look healthy & normal, and no one would ever look like at me and think I have a disability, that I have eye drops everywhere, that I have 4578 water bottles on me at all times because my mouth is SO dry, and I have to make sure all my food is moist otherwise I can’t swallow because my mouth doesn’t produce enough saliva & so on and so forth. Sounds so weird, I know.
But before we dive into it, you may be wondering what the heck Sjogren’s (pronounced “show-grins”) actually is…
Sjogrens is a chronic condition where the first two major symptoms shown are;
- dry eyes
- dry mouth
The eyes can feel dry and sandy, and the dry eyes and mouth can feel like cotton. It affects your salivary glands, immune system, and sjögrens syndrome can cause arthritis and musculoskeletal affects on the body.
It can also affect other parts of the body:
- joint pain
- muscle aches
- dry skin
- prolonged fatigue
- enlarged lymph glands
- persistent cough
- brain fog
- dental problems
- damage to lungs / liver/ other organs
It is named after a Swedish doctor, and Sjogren’s can affect all people, but generally is 90% women starting at around 45 years of age.
It’s kind of a weird autoimmune disease. I was diagnosed when I was 27 right after I moved to Las Vegas. Initially I didn’t think much about it, and I definitely would have never though it was anything that would majorly affect me.
I recall that about a month before we left Texas, my eyes had started getting a little dry – dry enough that I needed to keep eye drops next to the bed. The joint in my right hand index finger had started aching, but again, I didn’t think a lot about it (as a hairstylist sometimes you may have joint pain from time to time). As we were preparing to relocate I was also leaving my salon in Texas, so I was doing TONS of extension applications and removals. I assumed my joint pain was simply from overworking my hand.
When we arrived in LV, my finger and dry eyes were beginning to become a nuisance and starting to interfere with my normal life, so I went to my Dr to take a look. Long story short, what he assumed was osteoarthritis (the kind of arthritis that happens after overuse), and dry eyes from living in a drier climate, was actually a legit autoimmune disease called, Sjogren’s Syndrome.
I was shocked. An actual disorder that has no definitive solution?? It was hard to believe.
At the time there wasn’t much to do other than just use eye drops and hope that my joints wouldn’t get too much worse.
A few years later I went to the eye doc, for a routine eye exam. I mentioned my dry eyes, and he told me that it was VERY important that I have routine eye exams because most of his patients w/Sjogren’s have major eye problems and many end up needing surgery because their retina separates from the eye.
So of course, I’m like OMFG – you’ve got to be kidding me. This dry eye thang is serious.
In 2016 I was pregnant, and that is when I really began to recognize the severity of Sjogren’s.
To my surprise, I was considered a high risk pregnant mother due to Sjogren’s. 😳
Because of this, I had to go a specialty high risk pregnancy doctor for monthly visits where they had to monitor the baby’s heart.
With Sjogren’s, there is a risk that the mother’s antibodies can pass through to the unborn baby, in which case the baby’s heart may not beat properly, and they would need to take immediate action w/medication (If I recall correctly, I believe the Dr said it was a type of steroid. (If you test positive for anti-SS-A (which I did), your doctor may want to monitor your baby by fetal echocardiogram where they use ultrasound waves to see heart as it beats.) The good news, is that they can treat this if they catch any problems in time! The bad news is that it is very expensive (my insurance didn’t cover any of it), and is just SO many scans.
We were so fortunate and blessed that there were no complications during pregnancy. Lily was, and still is, a healthy, happy baby.
SO let’s jump ahead to post-birth.
Fast forward to the past year or so, and it’s like Sjogren’s finally caught up to me. Which is why I decided to finally write this post! I think that my post-baby body have been like OK WE’RE A BIT TIRED AT THIS POINT.
Here is a quick run down of what has started happening over the past year:
- EXTREME dry mouth flares
- Oral thrush
- Tounge flares
- Coughing attacks
- Dry skin patches on face
- Dry eyes that require gel drops
- Fatigue flares
- Having to use coconut oil in my mouth as an oral moisturizer
- Dentist prescribing me a medical grade toothpaste
I started having major coughing attacks & sinus problems post-baby, to the point where my Dr believed I had chronic sinusitis (another Sjogren’s symptom), and I went to an ENT doctor and had this crazy 2 ft long rod thing with a camera shoved all the back in my nose to check my throat for inflammation.
I also started having REALLY dry mouth, like to the point where my tounge felt like sandpaper and the only thing I could eat was a special probiotic yogurt to ease the feeling on my tounge. I know this is weird to say, but my tounge has been SO WEIRD over the past year. At first I thought I had anemia because my tounge was white and felt like cotton, then I got a blood test for that & I don’t have anemia. I believe it’s been an on & off again fungal infection in my mouth caused by Sjogren’s (because there isn’t enough saliva production so bacteria in the mouth multiplies faster). 👅
Also it doesn’t matter how much water I drink, I’m always thirsty. Sjogren’s has this thing called “flares” and it’s basically when all of the sudden your body goes into a Sjogren’s shock, and for me it’ll be like out of nowhere and my mouth goes completely dry even if I had 67934 ounces of water.
Super dry foods are a no no. Pretzels? You mean sticks of cardboard?? No thank you! Crackers w/no spread? NOPE. How about a dry sandwich?? NO call 911! 🥴
ANY dry ass foods are a no way – never going to be able to break that shit down in my mouth – much less try to swallow it – type of situation.
The dry air in Las Vegas clearly does not help. It’s not great for Sjogren’s symptoms, and my skin and eyes feel way better when I’m in more moist climates. But for now, here we are in the desert. 🏜 🌵 To make things better, I always have my heavy duty purple humidifier on high. (Many of you asked me about this gigantic purple gadget on Instagram, and I highly recommend this brand! I absolutely LOVE it. You only have to fill it up every couple days, and as Alex says “you have your own little storm cloud next to you!”) 🌧
Many more healthy products (things for tears and saliva, immune system, etc) that I use for Sjogren’s symptoms to come. I will share some of my faves on the blog next week. ☺️
If you are a blog reader, you know I don’t share these personal posts too often, but since we are in a pandemic, this autoimmune illness, like other people with autoimmune disorders, has been at the forefront of my mind due to trying to keep safe in the midst of a pandemic and having a lowered immune system. (I mean seriously 2020?!) Sjogrens can also affect your lungs, so that is one of the many reasons staying safe w/Covid is a big deal. Any one else just want to cuddle up in bed and be a bubble boy/girl right now? ⃝🙃
To be honest, sharing these type of posts don’t make me feel great, which is one of the reasons I have been avoiding writing this. I like to write about happy, pretty, chic things, and I tend to be perpetually positive, and I refrain from attaching myself to anything that I don’t want to continue to manifest – I know that the most powerful words in the universe are “I AM,” so the last thing I want to say is that “I AM sick,” or “I have X.” – the farther I can detach myself from what I do not want to be/have, the better. Plus, I simply just don’t like to identify with an illness. I hate to say that I have anything, but on the other hand I really want my story to help people.
I decided that even though I don’t like to talk about this topic, it is important especially given the pandemic we are living in where more and more people are looking for ways to not feel alone, and places to connect online.
Which SIDE NOTE is why I am so obsessed with affirmations, and why I created @theaffirmationbabe – this is healing work & inner thought revitalizations that are necessary in today’s world.
This post is a way for me to get this story OUT (and behind me!). This is not a woe is me post; it is to help people who are longing to feel like they are not alone. (Hey babe, you’re not alone! We all have stuff! 👋🏼)
I have a couple more posts to share in the future regarding Sjogren’s, but this will NOT become a highlight of my blog. I plan to SEO the hell out of this, so I can direct people to helpful autoimmune resources focusing on remedies for wellness, LOA, mindset health, and affirmations to promote healing their life through their own personal power. 🎉
Just remember that no matter what someone looks like on the outside, everyone is working through something, that you may know nothing about.
If you are struggling with sjogrens syndrome or another disease, you can help heal yourself, mentally, physically, and emotionally! Look at all of your options. Stay connected with people who help you feel more positive! Always speak to a professional, listen to your medical doctor’s medical advice and choose what treatments feel right for you.