Sjögrens – April is Sjögren’s awareness month
What the heck is Sjögren’s syndrome? Basically it’s when your immune system thinks your moisture producing glands are the bad guy and seeks to destroy them. Eyes, mouth and lady bits are all affected, along with many other things. It’s quite a bear. You can read more about it at Sjogrens.org
How did I get here? Well, no one’s really sure exactly what happened and a lot of that is down to the fact that I had doctors saying, “it’s all in your head.” How can anyone be receptive after something like that? Much less someone who has to sit under a heat blanket for an hour and a half every morning just to be able to stand up without crying. I know how to scale pain believe me, I’ve had three kids and I’ve been attacked by a dog. But, medi-cal pays for a mammogram and requesting an ultra-sound mammogram is too much work. So, despite symptoms of costochondritis, and ditching my bra years ago due to excruciating pain in my breastplate, she didn’t want to request it because, “it’s all in my head.” Cue narcolepsy rage… Needless to say, I wasn’t in a good place to be thinking clearly, or advocating for myself.
Going back 18 years… I enjoyed a pseudo remission for 11 years after my first pregnancy, what I can only assume was a “stem cell fix,” had me going like gangbusters, needing only one nap a day; my fibromyalgia pain minimal with a lump of latent tissue in my neck/shoulder area. Then, I was a passenger in a car accident and everything came back like it had never left. It was a traumatic time for me as I had a business that was failing, a marriage that was failing and then my health was failing too. After separating from my ex I went on public assistance and sought out a neurologist to get meds sorted out. Back in the 90’s I took Dexedrine and Klonopin and now they wanted me on Provigil and Xyrem. Xyrem is an orphan drug, sodium oxibate, aka the date rape drug Ghb. Well, the Xyrem turned my saliva to salt. My tongue was like a potato chip. I was so ill I didn’t shower for the last 18 days on the drug, and I only made it 42 days.
I tried to find out what was in my mouth that was causing my problems. I was constantly worrying my teeth, like a meth head, it was unsettling to say the least. Have you ever accidentally got food in your mouth while you were chewing gum? It would change the consistency of the gum and make it weird? That happened to me, without any food. An urgent care doctor did a saliva swab (which took a long time to convince them to do) and they found an abundance of pseudomonas in my mouth. I went on serious antibiotics, went back to the Infectious Disease specialist they’d sent me to, the psedonomas was gone… “Then what the heck is this in my mouth?” His answer, “No idea, you need to go back to your primary doctor.”
Now to be fair to the doctor, she did say Sjogrens by name at an appointment and I brushed it off. At that time, I only had the mouth problem. But, as I thought about it more, I had always had dry eye. I worked for an optometrist after high school and contact lenses would literally fuse to my eyeballs after a few hours, I had to stop wearing them and that was almost 30 years ago.
It has been surmised that a bout of walking pneumonia at 11 years old is what “set off” my narcolepsy. The immune system shuts down and when it comes back up, something is just not right. Therefore, I surmise the illness I had while taking Xyrem, did the same thing and kicked off the Sjogrens in a way it hadn’t before. The sodium/salty tongue thing is what has me clinging to a bit of hope that it’s just a reaction to the med. But, it’s been FIVE long years since I took that med and even with the AIP and all the other things I do for my health, I still have very little saliva. It’s a lot more than it was a year ago, my tongue doesn’t crack as much as it used to but yeah, still dry.
When I realized that I could not do meds any more, every pill, powder, capsule creates flares, even Advil, I decided to stop going to the doctor. I am treating my symptoms as best I can without them but it’s thoroughly disheartening to see the look of interest fade from the doctor’s eyes when you tell them you’re on autoimmune paleo and using turmeric and garlic for pain. “Oh, you’re holistically treating yourself.” No, I’m eating food. That’s it. I’m not brewing up some essential oil concoction to cure myself, I’m overloading on nutrients and minimizing chemicals and, I feel better! Better than I ever did on any med. So, if something’s working for you… keep doing it. If I break a bone, I’ll go see a doctor, until then, they have nothing for me, including empathy.
If you’re suffering, stop putting all your results in the hands of your doctor. The internet is an amazing place!
That said, if your meds are working for you… great! I’m not saying avoid doctors or meds, remember, autoimmune issues are an alacarte menu. No two of us will be the same. Find what works, and do it. Daily. Today I’m happy that even though I have about 97% of the symptoms of Sjogrens, I’m not letting it define me. I’m just, uniquely me.
Keep fighting the fight, warriors. And, be sure along the way to find some happy. Happy matters.
