Let’s just say, I already know this is going to be unpopular… And no, I don’t care…
A couple months over 5 years ago, I got sick. Permanently, irreversibly sick. More than 5 years I began the desperate search for answers to these horrific symptoms that tissue eosinophils throughout my entire GI tract, the chronic inflammation, pain, malnutrition, fatigue and brain fog… (along with a lot of other symptoms I won’t describe, (for your protection), first began.
No, I didn’t know I had tissue eosinophils. I didn’t know what an eosinophil is. I didn’t know how to pronounce; eosinophil, [E-oh-SIN-oh-Fill], took me weeks, maybe months to pronounce.
Fortunately, I’m a Bay Area native. I was born here. And despite an unfortunate 13 years spent in a suburb of, Salt Lake City, Utah, during my adolescence, I’ve been living in the Bay Area, most of my life, 33 years.
It’s a fantastic place to live, beautiful, colorful, adventurous, cultural. All the good things a hometown can offer. Especially if you want to avoid the suburbs as much as I do. Of course, I live in a residential area, but it’s urban. It’s awesome! You walk everywhere, great restaurants, weird people, clean air, lots of recycling and zero waste efforts. In fact, it’s so liberal, you’re almost judged for NOT, breastfeeding your baby in public!
So what’s the problem? Tech took over. The rent controlled tenants throughout San Francisco, Oakland and Berekely all began to experience evictions, people if color especially victims to these changes.
Boutiques were bought up by major corporations, gentrification throughout Oakland and Emeryville began… families now found themselves in a situation of losing a home, because landlords could get thrice as much rent, from a hip, young person who just developed a new app.
If you’re in a town with strict tenants rights, you had to fight to stay in your home. You have to call tenants rights attorneys and try to avoid the unscrupulous, greedy owners, who all want to be part of the, “billionaires club”, which we have plenty of, in the Bay Area. We don’t need more. Really, we don’t.
It was one thing that Silicon Valley was primarily in Palo Alto and the South Bay. But like a cancer, like my disease, it spread. It took over everything.
How is this relevant to illnesses and the chronically ill? I’ll tell you…
Let’s just say, as my symptoms didn’t resolve for months on end, I began a desperate search. I started at the UCSF digestive health, they didn’t find much, but they also didn’t have the technology of a, “super tech giant, hospital”, like Stanford.
So off I went to Stanford, and indeed, (after a few misdiagnoses and a myriad of testing), they found those wretched little monsters, the tissue eosinophils.
A few facts about tissue eosinophils throughout the GI tract, commonly known as, Eosinophilic gastrointestinal disease or EGID…
1: eosinophils have a purpose. They’re part of your innate immune system, meant to fight cancer, react to allergens, destroy parasites and of course other infections.
2: the most common EGID is eosinophilic esophagitis or EOE
3: the most rare EGID is eosinophilic colitis or EC
4: having an EGID likely means you’re suffering from allergies, from food to environmental elements.
5: each EGID has its own set of disturbing symptoms
6: tissue eosinophils aren’t only in your GI tract, you can get blood eosinophilia, called hyper-eosinophilic syndrome, or HES. You can get eosinophilic granuloma polyangiitis or EGPA, which are tissue eosinophils that take over your vascular system and usually cause lung or heart failure. You can have tissue eosinophils in your lungs, eosinophilic asthma… lets just say, you can get them everywhere.
7: upper EGID like EOE is an entirely different disease than a lower EGID, (that would be from the stomach down), eosinophilic gastritis, EG. Eosinophilic gastroenteritis, EGE. And eosinophilic colitis, EC.
With this knowledge, I’ll tell you the most misunderstood EGIDS to have, are the lower EGIDs, like mine, the EC, although I have them from esophagus through my colon, the worst being in my colon. Most people with EOE suffer from many, many allergies, and have been, most of their lives.
Needless to say, once they find those eosinophils, it’s important to figure out your allergies. If you’re like me, you don’t have any significant IgE allergies. Not through blood, skin test or food patch. Super helpful when you’re trying to figure out why, but can’t.
Luckily, I live in the Bay Area! Land of tech, precision medicine, innovators. There are tools and options EVERYWHERE!
Unfortunately, if you’re unable to work, and the cost of living is increasing so quickly, it becomes impossible to utilize these amazing advances.
Stuck on a limited income, and realizing that I live in what’s considered a, “sick building”, you have to consider that your home may be the problem.
In my particular situation, there was raw sewage that was dripping into my bathroom for more than a year, which the new owner of my building insisted was condensation, and refused to fix it until my bathroom ceiling crashed and my bathroom floor drenched in human waste.
Am I living in an expensive area in the Bay Area, (the now most expensive area in the United States), however, living like I’m in a favela of Brazil? Yeah… pretty much.
Then came the toxic mold. This apartment has no ventilation. Even with all the windows and doors open, there’s zero circulation of air. The heat is a radiant heat, in the ceiling above. The cheap, single pained windows are always have condensation, unless it’s really hot outside. Oftentimes the humidity inside my apartment is higher than the humidity outside.
Then there’s the asbestos. The deteriorating popcorn ceiling with friable chrysotile asbestos that lingers above my head. It wasn’t deteriorating until after a yearlong, required, seismic retrofitting, with jackhammers all around my apartment, enough to separate my bedroom wall, just raining asbestos all over my service dog and I.
Once I was hospitalized due to my lungs not working, the owner and property manager offered me, $10,000, “cash for keys”, meaning they’d take the keys, give me 10 grand to move out, like nothing happened.
In the hospital I considered this and opened up Craigslist to see what was available. I needed a two bedroom apartment for my daughter and I, and in the same neighborhood, central to all my doctors.
What I saw was sobering. In a town where you could always make a lateral move, with basically the same amount of rent you’re accustomed to paying, now was triple the amount… not working, sick as a dog, permanent damage to my lungs, not to mention the damages of chronic, systemic inflammation, dependent on antigen therapy and several expensive medications, on a fixed, limited income, (spousal support, which for the Bay Area, far below the poverty limit), how was this going to work?
Sure, $10,000 is a nice sum of money, but it’s not going to last me the rest of my life, so I declined the offer.
But let’s dash back to Stanford. It’s like checking into a 5 star resort. Valet parking, wheelchair service upon arrival and the best WiFi one could hope for while waiting for your appointment or streaming Netflix from your laptop.
Nonetheless, the elusiveness of my disease, the absence of allergies led to shaming by the doctors and on my treatment of steroids, my emotions poorly controlled, I lashed out, (verbally), in frustration, and was kicked out of the digestive health department.
I figured I could return to UCSF… which was a hard no, because I wrote to the first gastroenterologist and told her that she missed my disease, that she should be more careful.
Eventually I found a fantastic gastroenterologist at, California Pacific Medical, and she got me to the right immunologist who saved my life.
But here’s the reality. My pain specialist was still at Stanford, I had specialists in San Francisco, in Walnut Creek, Berkeley, and Oakland.
Being in the most expensive area in the United States means that each visit was upwards of $50, when you consider gas, parking, copay and bridge toll. This year, we’re going for $110 per visit, as my copays have increased from $30 to $65.00. On a poverty level income.
That cartoon spoke to my resentment in SPADES
My new or now normal is being sick. My other new normal of being depleted financially, because who doesn’t want to join the billionaire club?
And who needs billions of dollars? I need a safe home, healthcare and all the advances a rare disease patient needs, living in the reality of rare disease, and just 45 minutes from my apartment is the emerald city. The tech giants, the precision medicine geniuses and I will not only receive the benefits of this, I can’t even afford to move to a safe apartment for my daughter and I, because these billionaires who buy these properties with cash and turn them into AirBnb, income properties, I’ve been dusted.
If I’ve been dusted, hundreds, thousands more have also been drowning in the wake of Silicon Valley. And I’m not asking for a palace, only a safe, affordable home.
No. I can’t afford the biosensors or the 3D mammograms, or body scans, the scanners that check for the best vein to insert a needle without blowing up my now delicate veins. I don’t get that, because all of it costs a LOT of money. No home healthcare or caregivers for me. I only get extra help when my daughter is home from college.
So if you’re wealthy and sick, you have access. Doesn’t mean you won’t still experience marginalization and discrimination, right? Well… money… money changes everything.
If I had the resources that many have, in the tech world, I could hop on my private jet, after getting state of the art genetic testing, see the few, rare specialists we have in this country and things would probably be a lot more comfortable.
On my Covered California plan, many specialists in private practice, refuse to accept an ACA plan, because they don’t have to.
Money, greed, precision medicine and Silicon Valley… excuse me if I’m resentful. But choosing to stay in my toxic apartment, in lieu of a tent city, (because yes, our tent city encampments are the other new normal in the Bay Area), seems the safer option.
My question is… why all these advances, if it’s not going to help those who need it, but can’t afford it?
My other question is, why develop this stuff at all, if you’re not going to help the most vulnerable people in your community?
It’s heartbreaking watching my beloved Bay Area become the Gotham city of inequalities. Billionaires and poor people is what we are now.
Unscrupulous slumlords, precision medicine so close, but so far out of reach? Yeah… Silicon Valley… you suck. Tech giants, you suck. It’s easy to align yourself with, Joker. The streets are filling with trash. The people struggling to survive. Do your Teslas have a sensor so that you’re blind to this? It certainly seems so.
This article will likely never reach the tech giants of Silicon Valley and would it make a difference if it did? Are they going to supply me with care and a safe new home? No… they’re calling their assistants who made a mistake when the new iPhone came out, bought the wrong color and it doesn’t match the interior of their new Tesla, which was a gift from Elon Musk, himself.
You’ve made yourselves clear Silicon Valley, tech giants… and I have a feeling, that until you have a loved one or experience rare disease yourself, your only interest will be in fattening your billion dollar bank accounts.
Dear Silicon Valley tech giants, be better or leave, please. Some of us want to live in safe clean homes that are affordable and still have healthcare, still have a chance. You’ve shoved your advances in our face. You dangle the golden carrot of hope, as we the sick, just want to be healthy and have some quality of life. Why do you still need more?
Chronically Fabulous Warriors 