I have often said that Sjogren’s Syndrome is the gift that keeps on giving. I don’t know about you, but I’ve noticed that I have fallen into this..“because of Sjogren’s” rationale for everything physical or medical that happens to me.
Either wrongly or rightly, I have found that Sjogren’s gets the blame. Of course I have another significant diagnosis of CVID (Common Variable Immune Deficiency) that has been with me far longer than Sjogren’s has. As I grew up, it never occurred to me to research any of my medical issues.
I just dealt with them (or more accurately..my Mom dealt and paid for them). Being ill has been my normal for my whole life. I suppose that’s why I have a sense of humor about my never-ending, “kill me now”, “she’s always sick” saga.
Like I Need Another Problem (Said With Snarling Irritation)
So here it is folks..Obstructive Sleep Apnea. I know, I just wrote about this a blog post or two ago. It’s just been confirmed at this point. When the doc suggested a home sleep test, I was thrilled. This is easy. Do the test in the comfort of my home & mail the (already postage paid) unit back when done. And for the most part it was easy.
Of course my autonomic dysfunction (Thanks to Sjogren’s) kicked in like a woman in the throes of a menopause whole body sweatfest and drenched my gown. But because of this piece of pie, easy home test, I could not change my pj’s & disrupt the test. It felt like I was wearing a wet, soggy full-body diaper.
I suppose that it never occurred to me that the doc would order the real ‘in lab’ sleep test with all of the bells & whistles. I am lead to believe by those who have already experienced it, that I can count on a night of little sleep and lots of interruptions. For me, that means same night, different location.
Oh, The Choices You’ll See
I am back to research drawing board. This time I am trying to learn about CPAP & BiPAP masks. Because of my Sjogren’s affliction, I am particularly concerned about my choice in machines and masks. I have spoken to a few Sjoggies who mentioned that a CPAP (meaning continuous air) dries a non-Sjoggie out quickly. Oh my. Can you imagine what that will do to an already dried out throat & nose?! One person said that she had a problem with the seal causing air to blow into her eyes & quickly dried her eyes out.
Time For A Sjoggie Shout-Out
For those of you who have already lived this fun, please share. Have you found a mask that works especially well for you? I have to admit that with my fatigue and level of sheer exhaustion, I have high hopes for this mask & machine.
Let’s see if we are trying to determine the absolute best mask in our Sjoggie world, what would it look and function like? Of course it needs to be easily removable to accommodate all of our trips to the restroom, as well as our bedside table hydration needs. Must not dry us out worse than we already are (I’m already laughing on the floor). Must not add any pain to our Sjogren’s ravaged bodies. Must not add any peculiar sensations to those of us with neuropathies. Must be easy to adapt to, so as not to interrupt our already sleepless nights. Must allow for those of us who rock n’ roll every night, full freedom of movement. Hmm. Have I left anything out?
Now normally, I am immediately drawn to the girly pink color mask & the like (sucker for gender marketing), but for this choice..I am looking at form & function before cute.
I know I can count on my Sjoggie-Mates to help me out here. You know that when I mention Show-Grins to a CPAP/BiPAP supplier, I am going to receive the same blank stare we get from various health providers..right?! So come on now..help me out. Brands, styles, helpful tidbits…all personal Sjoggie input is welcome here.
There Is One Silver Lining
There is one silver lining here..because of Sjogren’s, I have made some wonderful Sjoggie friends and connections. That is the best gift of all.
Looking forward to hearing from you.
SjoDry and Searching