Tuesday, November 4, 2014

Portland: A Love Letter

Friends & family, 

If I were more the type to squeeeeee!, I totally would: right now, most days this past month and generally quite regularly. Our first month in Portland has been a glorious one and I'm pretty sure we couldn't have moved at a more perfect time. Summer in Portland is a truly marvelous thing; not to diss my previous cities and forests of residence but finally! a summer that doesn't suck. (To those who feel compelled to point out that's it's technically no longer summer and about to get rainy as fuck, my fingers are in my ears, and lalala, I can't hear you!)


Life has been marvelously full and busy, with the actual moving process accounting for more of that busy-ness than we'd have liked. We've now mostly settled into our house (which we're loving), despite *still* not being fully unpacked. We've sort of accepted the fate of endless unpacking and have prioritized steeping ourselves in the city (AKA: doing fun shit) over pretty much everything else. Buy, holy smokes, moving is a HUGE FUCKING JOB. You have no idea (unless you've recently moved in which case, holy fuck, solidarity).

Our neighborhood is super sweet and quiet and just a stone's throw away from all kinds of fabulousness. Our friendly neighborhood woodland wonderland (more commonly referred to as the local park) is super awesome and literally around the corner. An adorable historic commercial strip is 10 minutes away by foot and has pretty much everything we need. Most notably from Eli's perspective: burritos (or possibly the movie theatre that also serves up pizza); from my perspective: YOGA; from David's: jelly beans; and from Micah's: a rideable twirly doodad at one of the neighborhood's many rad playgrounds.

Forest park, which sits just across the spectacularly gothic St. Johns bridge, has become a home away from home for Eli and I. At over 5000 acres of fabulousness, it's a slice of woodland paradise etched into the city landscape. I was initially kinda blown away by its vastness (how can such a thing exist in smack dab in the middle of a city??) and a lil research confirmed that indeed, as one of the country's largest urban wooded areas, it is, indeed, an urban anomaly. One of its claims to fame, the wildwood trail, is hands down my favorite jogging/hiking trail of all time. It spans the length of the park and I'm determined to cover all 27 miles of it at some point (yes, yes, a 27 mile forest trail in the middle of Portland... it's glorious!).

Back at the urban homestead, the cats and chickens have happily adjusted to their new digs. While having chickens here continues to be a whole lot of fun, it doesn't exactly admit us to a small club. Portland peeps love their chickens (also: goats & in the case of one of our neighbors, a donkey). Our hens love the wide open yard and seem to have developed a love/hate relationship with the other critters who hang about (blue jay, squirrels, skunks, etc). Peeking out back is always a bit like watching an episode of animal planet. The other day we watched a squirrel bury a nut as a blue jay sneakily watched from a nearby bush -- as soon as the squirrel moved on, the bird hopped down, snagged the nut & literally flew off singing into the sunset. Suspicious trails of chicken feed also seems to lead from the coop to the squirrel's favorite sleeping spot...

I hope our critters don't get tooo used to the wide open space; come spring Operation Backyard Orchard is in effect! We're making fast progress in that direction, preparing the space for planting, and come spring, 40 fruit trees go into the ground! Our orchard plan is mapped out (thank you hyper organized engineer boyfriend!) and, currently, we spend our copious spare time mulching & amending the shit out of the yard! Hmm... the shit *into* it. ;)

Other Portland odds and ends: David and Micah have found kindred spirits at the Pokemon league, hosted at a local game store. Obviously a huge hit... especially for David :)  I'm getting a hiking group going for local unschoolers (Eli and I figure since we already hike so much, we might as well make a social adventure of it some of it at least the time). And by some crazy coincidence a new hackerspace is in the process of opening in our general neighborhood. David and Eli have contributed a layer of paint to the cause. Eli and I are looking for volunteer opportunities to get involved with. And the chiddlers, generally, are having a blast and absolutely loving big city life.

It's hard to convey the amazing energy here in Portland. It's just an awesome fucking place, filled with people who care deeply doing amazing, creative things. Always with an edge of freak to it. And kindness abounds! Nice weirdos everywhere!

We do experience bouts of missing the Rancheroo. Micah and I miss living in the woods, in particular. Eli has pointed out that he actually spends more time outdoors in the woods here than he did at the Rancheroo (it's true... he and I are literally hiking forest park for 3-4 hours, many days weekly). David is strangely silent on the subject of missing the woods. ;)

Mostly, though, I feel sad about not having done this sooner. It's been obvious for years that the Rogue Valley was not the right fit for our family. But major life changes were set back at least five years by undiagnosed illness, 3 brain surgeries, an adrenalectomy, recovery, and of course the inevitable recovery from the recovery. So I guess I'll cut us a lil' slack. It's good to be healthy and moving on. :)

Much love to all, 

Portland Lowe Clan
(Originally written and sent to family in September but just getting around to posting now)

Tuesday, April 8, 2014

Cushing's: My story, a journey through hell and back

Apologies in advance to the squeamish among you, but for the month of April, my dysfunctional endocrine system is hijacking this blog. April is Cushing's awareness Month, and I'm accepting the Cushing's Awareness 30-day blog challenge. Well, sorta. My goal is to blog more than usual throughout the month of April, though not daily. I wish, but there's just no way. I do hope to bring awareness to Cushing's disease, a devastating condition that within the medical community is considered to be exceedingly rare, but among Cushing's patients is suspected to be not particularly rare, only rarely diagnosed. I hope to contribute to the amazing awareness my fellow Cushies have been spreading, so, please -- friends, family, random internet folk -- be super swell and share my Cushing's related blog posts this month... like this one!

So, yeah, Cushing's. As most of you know, I'm a bit of an expert on this particular topic. And those of you not yet familiar with my decade plus long health saga I think will soon agree that my self-proclaimed expert status is well deserved. 

Cushing's is an endocrine disorder caused by prolonged overexposure to the hormone cortisol. Cortisol -- a life-sustaining hormone produced in the adrenal glands -- does all kinds of super important things. It regulates blood pressure and blood sugars, supports the immune system, regulates the metabolism and helps the body in times of stress. Sounds great, eh? It is. Unless, like me 5 years ago, you have too much of it. Then it is very very horrendous and sucky and a bad, bad, bad big ol' pile of shit.

The whole "too much cortisol" thing is called Cushing's Syndrome. Cushing's *Disease* is a bit more specific: basically Cushing's syndrome occurring as a result of a small, non-cancerous (technically "benign" but fuck that!) tumor on the pituitary gland. The tumor secretes excess amounts of the hormone ACTH, which in turn tells the adrenal glands to make too much cortisol.

For me, the whole terrible mess started about 13 years ago, with a sudden onset of symptoms while I was living in San Francisco. I got very sick, very suddenly. My list of symptoms was extensive and included: crazy sleep problems, extreme dry mouth and chronic thirst, heart problems (though they were relatively minor at the time), distressing skin problems, rapid weight gain, GI problems, sore muscles, and exhaustion. This really is just to name a few, but I'll spare you the details. The hyper-curious among you need just google "cushing's symptoms." Lucky me... I got them all.

As you might imagine, I was freaked out and felt as though something had gone terribly wrong with my body. Those of you who knew me well probably remember my frequent trips to the doctor. Unfortunately, they came up with ziltch. Nada. Nothing. And at the time, nobody even mentioned Cushing's. When we moved from SF to OR, I gave up looking for years and went on with my life.

My symptoms continued, and I continued to feel unwell, but not horribly so. Overall, I was able to lead a super happy life despite my underlying health problems and, though I did continue to feel like something was wrong, I'd convinced myself that it wasn't anything serious.

Boy was I wrong. It hit me like a slap in the face about 6 years ago, when my health took a very sudden turn for the worse. All my symptoms worsened and I developed new ones. My hair started falling out in clumps. Despite the fact that I was making a huge effort to keep my body strong, through hiking and yoga, my muscles weakened to the point that I was barely able to do simple things like get up out of a chair and walk. I developed some serious problems with my heart (doc: "you're not leaving this office until you start this blood pressure medication") and all kinds of other things  started going haywire.

I knew something was seriously wrong. Fortunately, I lucked out with a very smart doctor who strongly suspected I had the little known, "very rare", Cushing's Disease. Unfortunately, I wasn't able to see her again... and my next few doctors were clueless and doubtful (i.e. convinced it definitely wasn't Cushing's and hesitant to believe there was anything really wrong with me at all). I decided to start researching online and from the moment I first read about Cushing's, I knew, without a doubt, that I had it. David was more than a little sketched out about the idea of self-diagnosing on the internet, until I forwarded him an article on Cushing's, at which point he was also completely convinced. For him, it was partially that I had every symptom and that he already knew I had high cortisol (the one  consistent thing that had been turning up in my lab results). But mostly, he diagnosed me based on one symptom, which he had never even thought of as such. You see, one of the telltale signs of Cushing's is bright purple striae (which is a fancy and somewhat more flattering word for stretch marks) that appear on your abdomen, boobs, back and other parts of your body. I started getting them everywhere very suddenly when I first got sick 10 years ago, but we never thought of them as a symptom. We just thought they were weird.

After my experience of being brushed off by doctors for so many years, despite the fact that my symptoms and lab results pointed to Cushing's, we decided to skip the middleman and travel to see a Cushing's specialist.

Turned out that was about the best decision I've ever made. The testing process was INSANE and involved a month of near continuous peeing in jugs, fedexing spit samples and blood tests. Sadly, due to the often cyclical nature of the disease, Cushing's can't be ruled in or out by just one cortisol measuring test, so proper testing involves repeated and diverse testing, to improve the odds of catching the high cycles of Cortisol. My doctor also ordered a pituitary MRI to check for a tumor. The long and the short of it is that my MRI did indeed turn up a tumor, and my biochemical tests proved that I had high cortisol as a result of the tumor. All in all, once Cushing's was suspected, my diagnosis came relatively quickly, something for which I am very grateful.

The first treatment step was brain surgery to remove the hormone secreting tumor from my pituitary gland at the base of my brain. Unfortunately, it turned out to be the second and third step as well. Yep, I'm an official card carrying member of the brain surgery guild, three times over. Unfortunately, all three surgeries failed to cure the Cushing's and I was left with a mostly broken pituitary gland, and only one feasible option to cope with the Cushing's: the removal of both adrenal glands, or what's known within the Cushing's community as a BLA (bilateral adrenalectomy). Even this was no guarantee of a cure, as Cushing's persists in a small fraction of patients who undergo the procedure. Fortunately and finally, it did turn out to be my cure. Three year ago, almost exactly, after over a decade of symptoms, I was finally Cushing's free.

Recovery has been a process and often a slower one than I would have liked. Imagine trying to undo over a decade of disease damage; then throw in a new chronic disease to contend with. You see, the huge downside to having my adrenal glands removed is that I now, well... have no adrenal glands. :) And because the adrenal glands produce life sustaining hormones, not having any is in and of itself a pathological sort if thing. Fortunately, unlike Cushing's, it is a manageable disease thanks to modern medicine... and a husband who reminds me to take my meds when he notices I'm becoming unusually cranky.

The good news tho is that, I am now -- 3 years later -- doing extremely well. Every one of my symptoms has resolved. I've gone from deathly ill to pretty darn healthy. I have my life back. I'm healthy and strong.

Well, there you have it: the not particularly brief version of my health saga. A cushie's story is never quite complete without pictures to document the transformation from not sick to sick and back again. I have mixed feelings about sharing these pictures and in general making a big deal about the weight gain aspect of the disease and weight loss aspect of recovery. My reasons are twofold: 1) I'm an intensely private person especially when it comes to my body and find it incredibly awkward when folks, especially strangers, comment on my weight loss. But mostly 2) I think the cultural obsession with thinness is COMPLETELY AND THOROUGHLY FUCKED UP and don't really relish the idea of adding to societal body image neurosis by bragging about my weight loss. That said, extremely rapid weight gain for me was a medical symptom of a nasty disease, and was very hard on my body. Losing weight has been a very important part of my recovery. So here goes, pictures. When most people see these they see only weight loss. When I see pics of me with Cushing's, I see how very sick I was. 

Here I am looking healthy, happy and and strong:

Okay, high fives all around to those who've made it this far. Seriously, you rock and I really appreciate you reading my story. And I'm really done now. 

Except for these few Cushing's links. :)