I’ll begin with this, I have been extraordinary fortunate. Despite the insomnia that’s keeping me awake, I know how fortunate I am.
My overall story, may be fraught with horror stories, being shamed by doctors, doctors trying to give me psych meds, when the didn’t understand my situation, side effects of medications, treatments, none of which worked, and I had my illnesses working against me, while suffering the intense side effects of, “hopeful”, treatments.
Being sick, is not for the faint of heart, you’re fierce, despite feeling helpless
I was weak, significantly malnourished, my body was crumbling. The anemia called for iron infusions, to which I experienced anaphylaxis, my gut too sensitive for vitamins, I was sustaining life on elemental drinks, which are a specialty, medical food. This is made for infants and children, not necessarily adults and they were EXPENSIVE!!!
Four days of nutrients came in a case of formula costing $130.00, each case. Insurance doesn’t cover medical foods in California, unless you have a gastric tube, which may seem appealing, (yes, a gastric tube can sound highly appealing, when you’re constantly nauseous), but gastric tubes lead to more problems, at this point… you don’t need more problems.
For nine months, I’d live with elemental formulas as my sole source of nutrition. A fundraiser was begun, and I was able to, mostly get what I needed. And there were times that it seemed I could go without the elemental formulas, but that didn’t necessarily last. I would just always need a case in my pantry. However, I was still anemic, weak, malnourished, and suffering with incredible pain, and starvation.
It was during these days, I never thought I would escape this hell
When you reach this point, it’s impossible to imagine that life will ever improve.
I’m now 5 months into remission, I’m able to eat, actual food, avoiding any of my allergens, getting stronger. But let’s say I woke up to a reality I never expected.
Once you’ve been gravely ill, your body has been an scientific experiment, you barely feel human anymore. Worse, many of the people you thought would stick by your side, have departed your life. Sometimes, it’s okay. As painful as it is to experience, it’s okay, that some of them left. They won’t allow me, to be, the latest version of myself. I am stronger, because of this.
It’s so cliché but, it’s saying for a reason, “that which does not kill you, will only make you stronger”… yikes, it’s true…
It’s a rebirth, an unexpected awakening
You learn, you figure out how to cope. The reason I say I am fortunate is because I did find the right immunologist and he found the right treatment to get me into remission.
I can drive again, eat, go on walks, take showers during the day. I’m no longer so weak, that it was an enormous feat, just to get dressed in the morning, (into loungewear, of course), and make it to my chair to watch tv. I needed a caregiver, she came twice a week, and I no longer need her help in my home, (although she will still come by and visit and even help me with my dog, should I need it). I can clean my own apartment, do my own laundry and dishes.
These things may sound trivial, but they’re the basic human abilities, that we mostly complain about, until one day, you can’t get out of bed, you can barely move, let alone think, the brain shuts down quickly with malnutrition.
Where I am now, is discovering my, “new normal”, it’s lit a fiery desire to never see someone suffer as much as I did. With a rare, autoinflammatory, allergic, gut disease, that most doctors know nothing about, it can be tumultuous.
Where I am now, is to be passionate about helping others in my same position, four years ago. I may have the rarest form of an Eosinophilic Gastrointestinal Disease, or, EGID, with eosinophilic colitis but it’s given me the opportunity to understand what happened in my body and not to take for granted what’s happening in YOUR body!
This is a battle, we take on together!
Chronically Fabulous Warriors 