"3 days in the Underworld isn't fun and I'm pretty sure my story of suffering didn't have one of those happily-ever-after endings or one of those mythical, mystical gratification endings like Jesus, Inanna, Osiris, Horus, and others got after their 3 days (you know, like saving humanity, becoming a llama-goddess, achieving immortality, stuff like that.) Oh! If only those 3 days could have done something miraculous for humanity, or llamas, or the planet, or transformed me into Willow 2.0 (ahem, I mean Penelope 2.0!)... something - anything - Oh, WHERE is the silver lining behind this ominous dark cloud?" * dramatic sigh * Penelope, or Penny as my darling partner calls her, is my drama llama for those of you who have never met her - it's a long story, but just go with it for now. She can be very enthusiastic, inspired, victimized, indignant, and generally dramatic about stuff. And yes, she is me, but only one facet of my complex personality (Pssst! Don't tell her that, though. She wouldn't like feeling minimized!)
She is normally a gentle and quiet llama, but when she gets pushed too far, she lets it all hang out and goes on these rants. I gave her the first paragraph of this post to be a sacred witness to the not-so-pretty bits of myself on this journey and to remember the value of humor, especially when I can genuinely laugh at myself and the 3 days of hell I just endured.
Last Wednesday I got up, excited about the morning and getting into the yard. Within a few minutes, I was throwing up violently and started developing that burning breath-taking pain just under my ribs that drove me to the ER in California last August. It's a ferocious pain that is unfortunately exacerbated by breathing, making it wildly painful to take a deep breath and nearly impossible to not hyperventilate. In fact, I couldn't stop hyperventilating until IV pain drugs kicked in. But how could this be? I had not been taking the antibiotics or other harsh pharmaceuticals that I assumed caused that bout last year. My melt-in-the-mouth Zofran tablets had no effect and after writhing in pain for a few hours, unable to manage my nausea and realizing I was helpless to shift the tide, off to the ER I went, thanks to a neighbor's lead foot. All of my blood work came back normal. Random nausea and vomiting, says the doctor and off to home I go. Of course, this took the entire day but I was so relieved to be out of pain, I was OK with it.
Thursday I woke up with the beginnings of a migraine. Seriously?! What kind of gauntlet am I running here, I wondered? I took the new migraine medication and was wiped out for the day, but managed to hold down what little food I ate. I stayed in bed in the dark.
Friday I woke up, excited to be headache-free and about my morning rituals of coffee, rocking chairs and reading with my love. Within a few minutes, I felt like I was in a rendition of the movie "Groundhog Day" and I was back to the violent vomiting and wild, burning pain and off to the ER again. My family doctor said it sounded like gall bladder and as I expected, the ultrasound was normal. They decided to order an H. Pylori test and after I got home, realized my Lyme doc already had one done and it was - of course, negative. Oh Lyme, you are a fun, fun dance partner. Always mysterious and elusive.
I made a few posts on Facebook about my experiences and got a message from another Lymie friend asking if I felt this was related to my illness. She said the exact same thing happens to her, all of her blood work and other test results are normal, same as mine, she has a sub-fever, same as mine, and the only thing that alleviates it is a big dose of pain killers, same as me, and it seems to be random attacks. Strange, strange indeed. What does it mean?
Here it is a week later and I finally feel stable. However, I'm still not taking any of the bacteria killing drugs and I'm not sure where to go from here or what to do next. My family doctor made referrals for me to see an endocrinologist and an immunologist at UVA and those appointments are forthcoming. Hopefully, more light will be shed and more direction will be clear.
Even if I can get better treatments, I'm not sure I can afford them. I saw today that a friend of mine has a fundraising campaign going for her medical costs. What a crazy disease and crazy times to have it. I feel like I'm floating in an abyss and have no idea where I'm going or how I'm getting there, but hopefully it ends with my health restored.
