Friday, October 28, 2016

Leni's (My) Gotcha Day!!

One year ago today, Leni came home with me for the first time. As I was writing this blog, I initially titled it "Leni's Gotcha Day" since whenever we talk about rescuing dogs or bringing home a new puppy we refer to it as their "gotcha day." But as I kept writing, I feel like it was more MY "gotcha day" not Leni's. Today is the day Leni stepped into her role as my protective shadow to help me regain some semblance of control over my crazy, unpredictable symptoms. Today is the day Leni became more than just a fluffy poodle, but a critical part of my health management. Today, Leni "got" me as her job and graduated into her role as medical alert dog.

This past year has been a wild ride! You guys have seen glimpses of it as Leni has sharpened her alerts, I have become more attentive to listening to her, and we have grown together as a service dog team.

In the car after her first alert! What a good Leni Bean!
I remember her first spontaneous mast cell alert (meaning, I didn't prompt her) almost 2 months after she came home. We were at the Christmas concert at our church. Toward the end, she started getting restless and trying to get up, and I kept ordering her back down. We went back and forth several times before she stopped listening and started putting her paw in my lap despite me telling her to lie down again. She finally listened, but didn't stay down long before she was up again and pawing me again. It was only this second time that it occurred to me that she might be alerting. It caught me off guard so I didn't even feel like I knew what to do! About 15 minutes later, her alert was proven accurate as I started developing mast cell symptoms. Thankfully my cluelessness didn't results in an Epipen or ER trip this time! Since this first mast cell alert, I can say that we have both gotten much more in tune at reading each other.

To say Leni has changed my life would be an understatement. You can read that throughout my blog. Because of her, I now get warning before my severe mast cell reactions. I can start treating 15-20 minutes before my symptoms start. This means that sometimes, I can keep my reaction at bay and only experience minimal symptoms. Other times, I will still end up in anaphylaxis...but the difference is that now I get WARNING. I am prepared in case things do get worse. I can make sure I am somewhere safe. I can call Nick or get someone to help me. I can't stop all my reactions, but I can at least have a heads up that it is coming. Leni has helped me regain even a tiny feeling of control over these crazy symptoms. Nick and I have been able to attempt day trips and vacations we might not have otherwise, because the fear of unexpected anaphylaxis is much less. I don't fear as much random, out-of-the-blue anaphylaxis because I know that most times now, Leni will let me know when things are coming before my symptoms actually get bad.

ER trip due to low blood sugar that we couldn't get above 55.
She has also made a huge difference in my blood sugar management. The neurological symptoms that I developed last summer that left me barely able to walk were (at least partially) connected to chronic, severe hypoglycemia. I could not get my sugars to stay above 60...I was starting to see chronic neurological symptoms due to my brain not receiving the nutrition it needed since the only fuel source for the brain is glucose. I am hypoglycemic-unaware which means I don't feel my low sugars until they get into the 50s (sometimes not until the 40s...). By the time I feel it, they are already in dangerous territory (can cause passing out, impaired cognition, etc.) and it can be tough to get them up into a normal range. Since Leni is trained to alert when my sugars drop below 80, we have slowly been able to stabilize my sugars. It is so much easier to raise a sugar of 72 than a 52! These sugar alerts have been so important in reducing many of the neurological symptoms that were connected to this severe hypoglycemia.

As you can tell, I am so thankful for Leni and glad to have her as my protective shadow. But if I were to end this post here, I would be leaving out a huge piece of our story that I never want to forget...all the people who invested in Leni and her training without ever having known me. I cannot say enough good about Buckeye Service Dogs and the incredible work they do with these dogs. I am in touch with other handlers from BSD (one who has Leni's sister!) and we are all so grateful to Christy and her team for the time they spend on these dogs.

Because of Leni and BSD, trips like the one Nick
and I just took to Yosemite (and our trip to Disney 
in Sept.) are possible because we know we have 
an early warning system before a major mast cell 
reaction. It gives us some peace of mind and a bit
of control over my unpredictable symptoms.
One piece of our story that is such an incredible point back to God is the way that Leni and I got paired together. Leni was chosen as a puppy to be a service dog prospect. As she grew, she was selected to be matched with an incredible lady (and now dear friend!) with Myotonia Congenita. Two of Christy's trainers spent the most time working with Leni teaching her basic obedience, public access skills, and disease specific tasks for Kelly. As her training neared the end, however, they realized Leni (at just barely 50 lbs.) was not going to be a large enough dog for Kelly who needed a dog for heavier mobility work. The search was on for another dog for Kelly, and Leni became an almost fully trained service dog with no job...right about the same time we were beginning our service dog journey with BSD.

It was definitely a God-thing that my service dog needs, Leni's already trained tasks, her potential for future scent training, and our personalities would be aligned so well along with the timing of her becoming handler-less and us starting the progress of finding me a service still amazes me how many pieces came together in a perfect way at the perfect time for Leni and me to become a team! In addition to the growing bond that Leni and I have, through this journey, I have also connected with some people who have become so special to me along the way.

Puppy Leni! Somethings never change =P Photo
credit to either Sara or Katie!
Obviously the work Christy puts in to finding the ideal match for each of her clients and the disability-specific training was so important to me and Leni being paired. But never along the way did I ever feel like just a "client." We are forever a part of the Buckeye Service Dog family. They have changed my life, and I am so grateful for people so willing to invest in the lives of people they have never met. Along the way, Christy was (and is) always available to answer questions and help Leni and me transition from just dog and owner to an incredible team. I have met two of the trainers that had a huge role in raising Leni from a puppy and teaching her tasks specific to Kelly's and (later) my disabilities. Katie and Sara worked with Leni for months at a time teaching her basic obedience, how to behave in public, and specific service dog tasks that have been so important for me. Knowing now how Leni can be sometimes, I'm sure they had both good times with such a goofy poodle and moments of wanting to pull their hair out because Leni wouldn't. put. down. the. stinking. squeaky. toy!!!!! I am so thankful for their hard work to make Leni the incredible service dog she is for me today.

The last person who has become so special to me along this journey is Kelly. She is an incredible wife and mom of 4 who has become such a dear friend through our common bond in Leni. The first time I met her, I actually felt awkward because I now was paired with the dog who had been trained for her for almost 2 years...But that was crazy, because Kelly is such a sweet, beautiful, strong woman who I am so thankful to have met! Kelly's friendship is special to me because she understands what is like to be living with a chronic illness and to be a part of the service dog community because of that. I look up to her and how she handles being a wife and mother while fighting against her body daily. Her joy and resilience are encouraging to watch as she is determined to live life fully and with a smile on her face. I am so blessed to have incredible family and friends who are so supportive no matter what my mast cell disease is doing. But there is something uniquely special about being able to connect with other people who just "get it" on a deeper level because they are walking the same road. We may not have known each other very long, but Kelly is one of those people, and her encouragement and support as Leni and I have grown as a team is something I treasure so dearly.

What. A. Year. It. Has. Been.

This photo was taken after Leni insistently alerted to a low
sugar while I was driving. Because she was so persistent, I
actually pulled over to check my sugar instead of waiting another
5 minutes until I got home. As I pulled over, I started to black out
and shake so hard I could barely pull out my glucose meter. This
was one of my lowest sugars ever, and I was shaking even after my
sugar resolved because I knew how close I had been to an accident.
I know I have said it multiple times now over the past 2 months or so, but I am so thankful to be where I am right now. A year ago was a rough time in my life both physically and mentally. I had persistent, uncontrolled symptoms with few answers. There were days I felt like I just needed to accept that things would never change. Insurance was denying treatments that my doctors felt were my best option for successful management, I was dependent on a feeding tube that just barely kept me from continuing to slip into being malnourished yet again, and I spent so much time in ERs and picking up medications that more doctors, nurses, and pharmacists knew my name than fellow exercise physiology students at Kent. To say I was discouraged and struggled to hold onto joy would have been about as big an understatement as saying it is *occasionally* gray in Ohio in the winter.

Leni was a glimmer of hope in an otherwise very discouraging season of life. We didn't (and don't) expect her to be the cure-all for me. We didn't even know if the mast cell alerting could be trained. But we were hopeful that she could at least be another tool in my health management. Well, you guys have watch our story now for a year, and I'm guessing that you will agree when I say that she has most definitely fulfilled those expectations! A year ago when she "got" me as her handler, I got a partner that knows my body better than I do and has become such an integral part of managing my mast cell disease.

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