“Hope” is the thing with feathers – (314)
by Emily Dickinson
“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –
I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.
If hope is truly a thing with feathers, let mine be a falcon with me as the falconer as I once again “hunt” for an answer as to why I’m sick and what is actually causing said sickness. This hunt has been going on since 2016 when I could no longer ignore that I wasn’t “getting better” but worsening inch by stolen inch feeling more and more like I have a kind of chronic flu.
Initially, I was treated like a patient with a physical malady until test results would come back normal, negative, or subclinical. Some things can be faked. Sure. Chronic Fevers along with a basket full of quantifiable symptoms? No.
As doctors would get more information only to be left just as baffled as me, the reasons I would be given were typically weight related. Any overweight woman with an unknown chronic illness will have stories as well as acrimonious feelings toward doctors to share.
After getting more and more worn down by the system that just saw an obese woman with diabetes and high blood pressure with a default diagnosis of fibromyalgia, I set out to eliminate as many physical possibilities as I could. I thought, “Maybe, they’re right.” And, on October 1, 2019, I had Gastric Bypass surgery. It worked, mostly. No more diabetes, no more high blood pressure, no more high C-Reactive, and, now, 170+ pounds lighter and holding.
And, I’m still sick.
I wish that my weight had been the true issue. Although, deep down? I knew that it probably wasn’t the case. And, the fibromyalgia triggers? Eliminated. BUT. STILL. SICK. Getting sicker and sicker.
Two things that we knew to be true were that I have Mast Cell disease based on history and symptoms, and no side-effects from medications could be the cause for level and breadth of symptoms I live with every day. More worrisome symptoms have even begun to manifest… not that the ones I was already was having weren’t awful enough already.
For context purposes, I’m going to share something that happened recently. I was supposed to start work full-time with the local PD doing a myriad of jobs – mainly, being the first of my kind in our department… a skilled civilian that can assist law enforcement paving the way to a new type of police force. A police force that can be seen and that acts more equitable to ALL. This was like a dream come true for me. A way to affect change that would be adopted by other departments around the country? HELL YEAH! And, it really and truly was kismet of being in the right place at the right time; however, my health, which had been holding, began to plummet once again. So, I went to contract instead rather than lose my place – a tactic that my boss dreamt up. In fact, I was slated to be assigned a K9 as an ambassador. I was so excited at the prospect of getting my own K9 which would help me with drumming up funds and securing permanency within the armory for the latest and greatest in K9 protective vests. I’d even gotten to name my dog that was still being trained – Zaga, a sweet Dutch Shepherd.
And, I realized once the glow wore off that there was no possible way I could take her. A dog is one thing; a dog with a job is a completely different set of circumstances. All because I’m sick and worsening. So, Zaga is now slated to go to my partner. To say my spirit and heart were crushed would be a gross understatement. Dogs are my favorite thing about my life. My lottery dream would be to buy a ranch in the Texas Hill Country where I could start a non-profit that rescues and trains dogs. The only silver lining was that for the first time in our 21 years together my husband suggested we get another dog for our “pack”. Not only does Zaga have an amazing home and family to look after once she’s ready but so does a very handsome, smart, and sweet young German Shepherd now named Fenris that my husband and I adopted from BARC-Houston. And, he’s going to undergo extensive training in order be my service dog. Yeah, the only good thing about PTSD is that you might get a dog. Full. STOP.
There is a point to this post other than autobiographical. It’s that if you’re anything like me… sick and you don’t know what’s causing it… don’t give up on seeking answers or disproving theories you know are wrong.
As far as theories are concerned, there’s one that seems to fit better than the rest. Chronic Mastocytosis. It’s when your body makes to many mast cells which regulate histamine. We were all of the opinion that it was Mast Cell Activation Syndrome. Now that I’ve been on the medication for MCAS for almost a month and still having random reactions with no known cause or reason… Mastocytosis looks more likely. One of the main reasons for that Zebra of a diagnosis? Blood and myleoproliferative cancers run in my family. ALL of my family members that have had those cancers didn’t have abnormal labs until well into Stage 3. Two were diagnosed too late for treatment. One was diagnosed just days before she died. Mastocytosis is a predecessor for those cancers.
If I can get the diagnosis nailed down and treatment, then I can get back to my damn life. What we’ve spent on co-pays alone trying to find out WTH is going on would get me new figure skates as well as fully kitted-out for paddle-boarding and still have some left for a decent vacation or savings. I want to get back to fun as well as doing a job that I never saw coming but want more than I’ve ever wanted any other job in my life.
So, I’m going to take “the thing with feathers”, and send it out into the blue. I know the quarry is there. I know that it can be caught. I just have to keep trying.