So I have just been released—again for the 5th time—from the hospital. I was admitted last week for respiratory distress induced by stomach acid. Clinically known as chemical pneumonitis—that’s a mouthful. This is the second hospitalization for this in two months. And its all because I have a paralyzed sphincter between my stomach and esophagus so what goes down, always comes back up. And you add to this gastroparesis (paralysis of the stomach itself—there’s always a lot to come back up. Oh, and I have a large hiatal hernia that I’ve had since birth. And my esophagus has patches where it’s also paralyzed—they call all of this “motility issues”. And no one can fix this locally so I now have to take my ass to Temple University to see “motility experts” and then I may be able to get surgery to fix the situation that is progressive in my case because of the Lupus and the Sjogrens diseases. Joy.
And on top of this, I don’t sleep. Not a wink at night now and I’m a narcoleptic in the day. Supposedly this may be due to the wonderful collision of Lupus fatigue meets elevated Prolactin, when boobs meet the wolfy disease!
I know some of you out there are probably thinking how wonderful it would be to sleep all day, what a luxery. Trust me it’s not. The world operates on a proper sleep-wake cycle and so things are open during the day and close down to sleep at night. Being up offers the sole advantage of going to Walgreens to purchase impulse items, forgotten medications and emergency toilet paper. Of course Walmart is an option as well, one I almost did last night while awake.
But instead I did the kitty litter. Amidst howling and whimpering dogs who decided the great thunder clouds above had it specifically in for them. Sleeping is also not possible when three dogs are carrying on like death is imminent. Specifically when one is monster-truck size dog who sounds like thunder when she barks. But my cats are happy and slightly less smelly. What I should have down though was the wash.
When I was in college being awake was cool. And typically led to late night conversations about the nature of existence in the way only college kids talk about it—as if they somehow knew everything. There’s always a sense of snobbery about the college kid—a know-it-allness that sees life ahead as a challenge easily conquered because they are the next big thing, the one who will “get it”. Of course, life squishes this idea rather quickly upon graduating if not sooner. Insomnia is one way to squish the juice out of hubris.
But it’s all part and parcel of Systemic Lupus Erythematosus (SLE) and the wonderful other diseases that have come with it: Ankylosing Spondylitis (AS), Sjogrens (Sj), Antiphospholipid Syndrome (APS), Renaud’s Syndrome. And the names only hint at just how profoundly complicated the intermixing of the diseases are. First, they are barely pronounceable. When you have diseases that are next to impossible to pronounce, you know you are in trouble because the next thing you know you are faced with is unpronounceable medications…certolizumab pegol, methotrexate, hydroxchlorquine… that always creates for human in the hospital as nurses attempt pronunciations for the first time. Because I’m on 28 medications, it’s a lot of stumbling around words like alfuzosin, words they never hear and it usually leads to a great deal of laughter come the many times of day I take my medications. But seriously though, it sucks. Not the pill taking, you do what you have to do, but the symptoms that still exist even after 28 pills later. I have progressive forms of the disease, my body is not responding to great to everything—medications have slowed the diseases but they are marching along and stomping like Godzilla on a model-size Japan recreation that is my body. ROAR…. Stomp stomp stomp…
And right now I am miserable with a lousy stomach that can barely keep in the proper organ (it keeps rejecting food and UPSing it my lungs). My stomach is having an identity crisis I think and it has decided it wants to be my lungs and the lungs should be the stomach. And added to this my sleeping problems and I feel a slow descent into insanity. Thankfully I have three crazy dogs and three awesome cats and a fascinating, funny Raggedy Andy boyfriend to keep me grounded. The other day he and I had a “we got this” conversation of we handled another hospitalization with grace. He’s adapted officially to the upheaval that is Autoimmune Diseases. At least for now.
Now if only my stomach would stop having an identity crisis and start digesting food, I’d probably sleep. I don’t sleep in part because I keep choking on stomach acid and undigested food that my stomach rejects the moment I lay down.
