Thursday, August 23, 2012

Riley Reflections: Finding A Forever Home

Penned in August 2007, this story appeared in our county humane society's newsletter and was written about a month after we adopted Riley and brought her home. We've now been together for five years.

By Riley Hoskins

Sometimes, it’s funny how a newspaper can change your life. That’s how mine took a turn for the better, paving the way for a forever family and permanent home.

Just call me Riley. Everyone else does. In a way, the name almost reflects the uncertainty surrounding the first chapter in my life. Memories of my early days are fuzzy, but it’s tough to describe the little I remember as bad when it led me to where I am today.

They say I may have been abused as a puppy, but no one knows for sure. We don’t even know for sure when my real birthday is, though that V-E-T says I was about 1-year-old when brought home. All I know for certain is that the mysterious chapter of my life ended one fateful day when I stumbled into a Center Grove neighborhood at the tail end of 2006.

Back then, I was cold, lonely, and so scared that I didn’t even want to go around people – and everyone knows how much I love people! My typically shiny black coat was dirty, more gray than black, and I was tired and hungry and decided to take a break from wandering. There I was, standing in the road near a mailbox when she appeared. She was coming outside for her morning newspaper. Our eyes locked. Not trusting this stranger drawing close, I bolted. That didn’t stop her, and before long I learned her name was Nancy. She put a warm bed with some food on her porch for me and slowly I started going there for food and shelter.

After a while, Nancy took me in, cleaned me up, and gave me regular meals. Her grandson, who was 7 at the time, didn’t know what to call me or even if I was a boy or a girl. So he came up with Riley – because “that could be a name for a boy or a girl,” the story goes. I loved them, and the name suits me, but other pets demanded her attention and things unfortunately just didn’t work out. I’m grateful for Nancy and her husband, though, because she paved the way for me finding my forever family.

The next chapter began when Nancy took me to the Johnson County Humane Society. Soon came a foster dad – Josh. He was my go-between and took care of me for a few months. I liked it there, mostly because he had two other furry friends to play with. If I could play all day, I would be a happy dog. As much as I liked Josh’s house, it still wasn’t home. And all I wanted was a real home. Then it happened. Josh and I took a drive to the Golden Post Animal Kennel- a place I’d stayed before – for what I thought was a typical visit. But a new chapter was beginning, and for the first time, I was about to find my forever family.

Mommy and Daddy came into my life during that visit on June 25, 2007.

They tell me a story of how it was usually Mommy who’d be looking for a puppy or older dog to bring home; he wasn’t persuaded. I was different, they say.

Browsing through newspaper ads in print and online one day, he stumbled across my picture and biography – much as Nancy had discovered me on the way to her newspaper that one morning. There was a connection immediately, mostly because of my shiny black coat and big, brown puppy eyes. He forwarded my good looks on to Mommy, and within a week our fates were intertwined.

He had never had a dog before, though everyone in his family had and he spent his childhood wishing to no avail. Pictures at home show that she had a dog growing up who looked just like me -but I have to say that I’m much better looking! We went home later that week when Josh took me to their house, and I could tell right away that these two would be the ones I’d always be able to play with, comfort, love and cherish.

So here we are, living in Greenwood. In my first weeks, I’ve done more with them than I can remember doing before. Have traveled to Michigan twice - a camping trip and to visit family there. We have the big, one-acre Four Paws Dog Park within our neighborhood and go there a couple times a week to run and play with friends. While they don’t yet have a fence, I’m smart enough to know to stay inside the yard and not run off. I’ve been lost before, and don’t want to go there again. Aside from that, jumping, licking, and trying to get the silvery gray cat named Shadow to like me. That’s a work in progress.

Of course, like that day I first came across Nancy’s house, newspapers are still a part of my life. We have one delivered every morning. He likes to read it for the stories inside, but it’s more sentimental for me. A newspaper brought me home. Hopefully it will do the same for others who are in need of a Forever Home.

(Ghostwritten by Michael and Susanne Hoskins)

Sunday, August 19, 2012

Bartholomew Hoskins

You may remember my past post about the origins of my family history work started several years ago. This is a continuation of that, as part of my series publishing my past genealogy research and writing outside of the world.

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When I was tracking the name Hoskins through the generations, I had a solid line dating back to the early 1870s before there was any question. My 2nd great grandfather didn't actually ever talk about his own father, and so that's when it became unclear who was in our line from that point back. Birth, death and marriage records - along with land ownership and wills - helped connect the dots going back to 1790, when there was again uncertainty. I couldn't confirm that my ancestor apparently born that year was actually related to a line of Hoskins dating back to the Civil War days and possibly even to the pre-colonial days.

No documents seemed to exist, since the War of 1812 meant that any historical records from the areas I was searching had been long-lost... and my efforts to find any help in local areas where they were back then didn't offer any leads. It seemed I'd only be able to guess and assume...

Until a Bible page surfaced on a genealogical message board, confirming what I thought: that my family member from 1790 was indeed connected to a line of Hoskins going all the way back to 1600. The past research had all been done and confirmed by historical scholars, and all I was missing was a single generational gap that I now was able to close with a document.

This was probably the single biggest jolt of excitement I'd received during my entire family history project.

And that helped me finally be able to write this next part with confidence: I've got actual historical proof that connects me to past dozen generations in my family (!!!!)

So, without further ado...

Friday, August 10, 2012

At Least You Have Diabetes, and Not...

We all need a little perspective sometimes.

Mine came on the heels of a week of diabetes conference activity and advocacy talk, and it was a reality check that slapped me upside the head while screaming at me about how much bigger the world is than diabetes.

One phone call was enough to remind me that, in the grand scheme, diabetes isn't that big of a deal. Really. There are a whole lot of worse conditions and diagnoses that trump the "incurable but manageable" classification of diabetes any day of the week.

Especially those that carry the terminal disease tag.

I've been living with type 1 diabetes for most of my life, going on three decades. But I have no idea what kind of hell and devastation is involved in many other disease states such as Lou Gehrig's, Alzheimer's, Parkinson's and more. No clue. Given that, I'm lucky to be living with an autoimmune condition that I can keep "under control" for the most part and not be stopped from living a successful, happy life.

On Sunday, I learned that my aunt received news that she may very well have Lou Gehrig's, or amyotrophic lateral sclerosis (ALS). Basically, it's a devastating disease that is incredibly swift and efficient at what it does: attack a person's peripheral nerves, weaken muscles and eventually cut off the ability to move and breathe. And then death. All within a span of years that, generally speaking, you can count on one hand. Estimates are that about about 5,000 are diagnosed yearly, and 30,000 people have it at any given time. Do the math to determine how efficient a killer ALS truly is.

So, needless to say, this wasn't the kind of news you want to hear. This is my dad's sister, and we have a smallish family so we're all close and that makes this even more difficult. Not to mention the fact that she lost her 15-year old son, my cousin, suddenly and without warning to a form of leukemia a decade ago. Now this.

The prognosis is generally anywhere between two and five years to live, though some can last longer. And ALS is a degenerative disease, eating away at your body and essentially making you a prisoner trapped inside an immobile body while you remain fully cognizant and aware of everything happening to you and around you.

Makes a few fingersticks and syringe stabs every day seem a small price to pay for a "normal" life where you can achieve dreams and accomplish anything, doesn't it?!

I think so.

A friend was telling me recently about one of his close family members battling Alzheimer's, and that caused these same feelings to bubble up inside me — even before getting my own family news. This friend's family member has lived a life of brilliance, but now there are times when she drifts in and out of lucidity and can't remember conversations that just happened or even details about where she lives. It's heart-breaking, not only for her in realizing this is happening, but for family and friends who must endure the torture of watching someone so loved slip away.

To me, confronting these "other conditions" brings a level of perspective that so often we forget in this world. Suddenly, much of the online diabetes chat seemed trivial in my eyes. So insignificant: all the talk about summits and friendships, how educators do their jobs, blood meter marketing, tighter accuracy standards, fighting for affordable supplies, busting myths about what we can or can't eat, and whether some newspaper wrote a good or bad story...

While important in the D-Community, this stuff seemed almost laughable to even be thinking about in light of this ALS news that is unquestionably so much "worse." And believe me — I hate comparing or thinking of any condition as worse than another. No one asks for any of this and it all sucks. But there's a reality check in there somewhere. Honestly, even worrying about hypo-caused deaths in the middle of the night — something I dread with all my heart — seems unimportant right now, because they are actually quite rare and in most cases, the victims were at least able live healthily and happily before that low hit. They didn't have to endure the slow, torturous decomposition of their own bodies.

And here's the thing: I feel guilty about feeling this way, as if I'm slapping my fellow PWDs and D-Parents in the face. But it's what is going through my mind as I cope with this news. I feel guilty about ever complaining about diabetes or looking at it as some great burden. That guilt grips me when thinking back on all those people who've said to me, "Well, at least you have diabetes and not... (insert 'something worse' condition here)."

Now, I feel like I truly know what that line means. And it feels true.

Hell, I'm living with diabetes. Not dying or slowing rotting away as a result of ALS or some other devastating condition.

How dare I ever think I've got it bad, when there's all this other stuff happening out in the world?

After the emotional phone call and some personal processing of this news, I broke down and sobbed my eyes out. Bitterness and anger set in. I prayed and read my Bible, finding myself not comforted but instead asking "Why?" before even more bitterness, anger and tears set in.

And then.... Curiosity.

I realized that for all the diabetes living and advocacy I embrace, there's very little knowledge about Lou Gehrig's floating around in my head. Really, aside from a general sense of what the disease is, the main fact that came to my mind was the 1930s baseball player whom the disease is named after. I remember the speech where Lou Gehrig described himself as the "Luckiest Man on the Face of the Earth."

So of course, I turned to Google. To blogs. Community forums online. Any insight that friends on Twitter might have. I'm hunting for basically what I've found in the Diabetes Online Community (DOC)... Searching for not only knowledge, but stories of hope and inspiration... For me and my family.

There's not a lot to be found.

Specifically, it's tough to remain hopeful and tear-free when reading an incredible piece of journalism that ends with this line from an ALS patient: "While my mind n emotions r completely intact. Knowing full well the end result. And the road I'll be forced to walk. Becoming a prisoner in my own body. Watching my world fly by. Remembering how life used to be. Missing so much of life."

But, even in the darkness of all this heartache, there is some optimism and inspiration.

One of the best resources I've found is PatientsLikeMe, which was one of the first patient community sites and now going strong with 100,000 members that span 1,200 conditions. A Massachusetts-based family founded this site because one of their sons was diagnosed with ALS. It's not only a community to connect people, but also a repository for patients to share their clinical data (similar to what the Helmsley Charitable Trust is now doing with the Type 1 D Exchange and for diabetes). There's a multiple of other ALS communities and forums I'm finding, too.

Sure, there's no cure at this time. But research continues and treatments are being explored. And in this foreign world where I have little frame of reference, there's a familiar air of advocacy that exists on issues so much bigger than myself, or my family.

The FDA is examining clinical trials and mulling whether to expand ALS studies to more places where research could continue. Stem cells provide a bright hope for answers, despite the fact that politics are slowing the discovery process down. People sharing their ALS stories online echo a similar message to many in the DOC — that they felt alone, hopeless, and wanted inspiration and a sense of community rather than just the gloom and doom mostly portrayed in the press and by doctors.

All of this has touched my advocate's soul, transcending the diabetes universe to countless other lives.

That is what my energy will focus on now. Finding that inspiration for my aunt for as long as she's with us, and then tuning my advocacy on these issues to the broader chronic illness community.

Now, please understand: This isn't a pity party. That's not what I'm after in telling this story. I simply needed to share what I'm feeling and how many of the things I dubbed "important" in my own world seemed to lose luster after getting this news... Maybe it's part of some bigger plan, whether I like it or not.

I'm "lucky" to be living with diabetes. Not only because "it could be so much worse," but because it gives me some insight into the issues and conversations that can hopefully help a broader world of people suffering from all varieties of compromised health. I can only hope.

UPDATE: My aunt, Deborah Lynn Keeter, passed away on Sunday, Aug. 25, 2019 due to pneumonia caused by ALS. This came 7+ years after her official diagnosis. Donations can be made to the ALS Association of Michigan.

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This personal post that I wrote originally appeared at DiabetesMine on Aug. 10, 2012.

Wednesday, August 1, 2012

Hoping for an Endo Who "Gets It"

Sometimes, I just want to scream at my endocrinologist.

I'm not a textbook diabetic!

Don't say I am "uncontrolled"... I'm living with diabetes every day!

No, I DON'T know why that number from three weeks ago was 400...!

I'm not checking my blood sugars as much because I'm burnt out, and it's not like I can just flip a switc h to make myself feel better!

The Diabetes Online Community understands... why can't you?!

You just don't get it, doc!

Some variation of these pretty much come to mind every time I visit my endo, which is typically every few months.

Ever feel that way?

You might say my endo and I have a rocky relationship. We don't see eye-to-eye on everything, but she knows her stuff and is highly qualified to do what she does. And she helps me when I need it. Yet I am still frustrated... obviously.

I've been with this endo for more than five years now, after discovering her within a 10-minute drive from my house a couple years after moving to Indianapolis. That first year, I didn't see the need to find an endo and went without one, just getting all my prescriptions from my primary care physician. The first endo I found was just 10 minutes from my then-workplace, but he was a complete "yes man" lacking the ability to be aggressive in helping me with my D-care, I thought. He simply agreed with everything I said, even telling me all was fine when I clearly wasn't doing what was needed!

So, in finding Dr. P — a highly-coveted and respected endo in this area — I had found someone "better," a doctor who at the time I felt was "good enough" for me. There's a lot that I like about her: the fact that she allows for e-logging of BGs and doesn't charge for in-office pump and CGM downloading, she can fine-tune a basal dose or bolus calculation like no other I've seen when she has the full picture, and her reputation in this field is stellar and tough to compete with. Oh, and despite how effective or ineffective the office visits are, we typically have about 17 minutes or more to talk.

These positives are tough to ignore, and they're a large part of why I've stuck with her for half a decade.

But, for some time now, I've been feeling that I wanted more — and I'm not sure that "more" is something she can provide.

Put simply: she isn't living with diabetes and that is what I've been searching for in an endo. I've wished for someone who is a fellow PWD, who "gets it" and doesn't seem like they're trying to fit me into medical textbook definitions.

As good as she may be medically, my endo doesn't seem to embrace the concept of online peer support that I find so beneficial for PWDs on the "emotional side" of D-management. While she doesn't dismiss it altogether, whenever I raise the topic and talk up the benefits I've found in the DOC and how this community has helped me, she just nods and smiles... before going back to focusing on the numbers in front of me and wondering how she can get me to "do better."

To me, it feels like most the time we're just trying to do the Endo Song & Dance with a metaphoric chasm between us.

More and more often in the past two years, I've found myself craving that understanding of a fellow PWD. This feeling came to light powerfully after a good friend and fellow D-blogger who's also living with type 1 shared the story of how his awesome new doc actually read his blog and helped him feel better about his D-management.

That made me want an improved patient-doctor PWD-connection more than ever...

One person in particular was on my mind, but being confined to an office job and with him being a good 30-minutes away from my home and office, it just seemed too "inconvenient" when I had a decent doc nearby. The time just never seemed right. My motivation wasn't there to seek out that change.

Until recently.

At the ADA Scientific Sessions back in June, it all started coming together at an evening event where I was meandering around chatting with friends, awesome advocates and industry leaders.

Suddenly, a familiar face appeared in front of me — that of a fellow diabetes advocate in Indy, who I serve on a local D-Camp board with and who works as a diabetes nurse and educator in my town. We greeted and I quickly learned that her husband was across the room.

Why does that matter?

Well, this man is a coveted endo here in Indy who happens to be a fellow PWD, living with type 1 himself since being diagnosed at age 12!

I'd come across his name a handful of times through the years and thought about reaching out to see if he was accepting new patients, but just never took the time to do that.

But now, this Philadelphia meetup set the stage. After returning home, I reached out and got some great news: Despite the front office line of "not accepting new patients," he's willing to welcome me in as a new patient!!

I'm beyond excited about this, though there's a little regret that I didn't take the initiative to make this happen sooner!

Now, since we're talking about my future endo and I've not discussed any of this with him yet, and because I don't really see the need to ID him by real name, I'm simply going to refer to him as Dr. Understanding.

Because, you know, he "gets it."

Obviously, this isn't going to solve all my issues and make me "the perfect" PWD.

Having a fellow diabetic as an endo isn't a magic potion that will lower my A1C or give me the ability to do everything right. No, I get that.

Most of my D-headaches and "uncontrolled" aspects come down to my own lack of discipline and willingness to do what's necessary. My A1C isn't as low as it once was (I got it down to 6.1% a decade ago and have hovered in the 7% range for years before slacking). And sometimes I don't test or change my infusion sets often enough, or I fail on counting my carbs, because I just don't care at that moment in time.

As my current endo and also my D-therapist Mind Ninja has told me: "It's you, not the doctor or device." Yes, I get that. There's validity in saying that we patients need to see the situation from our endo's perspective sometimes, and not just the other way around.

But the potential for understanding in having an endo with diabetes is strong, and I think that maybe we can get past some of the frustrations that come with us not looking at diabetes from the same perspective.

We can bridge the gap, so to speak.

What I need is someone who not only knows their textbook stuff, but someone who can be aggressive while also offering a high level of understanding for what my life with this disease is really like. I need recognition of the real struggles of I'm going through, that it's not all about numbers. I need peer support, especially the kind of thing you find in the DOC. That's an incredible resource that more folks in the medical community should embrace to help their patients!

That's what I'm searching for. Maybe this new guy won't be "the one," or some cons may outweigh the pros at the end of the day... Who knows? We may not be the right fit. But least I'll give it a shot (ha!) This just seems like the right time to take this leap and try something new... We'll see.

Now I have to break the news to Dr. P. And get my medical records transferred. And take care of some long overdue lab work. And set up that first appointment. See? The change is forcing me to be proactive already.

I can't wait for a fresh start. I will let you all know how it goes! Please let me know any experiences you may have had with your endo about "getting it," and if you've ever had the desire or opportunity to have a fellow PWD in that role.

What do you look for when searching for a new doc? We'd love to hear about it