Trials and Triumphs

Exocrine pancreatic insufficiency (EPI) is a genetic condition where the pancreas does not produce the necessary enzymes required to digest food and absorb nutrients causing starvation regardless of the amount of food taken in. For further information and other resources on EPI I highly recommend visiting epi4dogs.com because my knowledge comes entirely through my experiences with Yara. Much of which has been chronicled here on my blog.

EPI is highly treatable, thankfully, but to say the entire thing was a struggle is truly an understatement. Yara has a penchant for stubbornness and from practically the moment she entered my life her choice method to showcase this was refusing to eat. Looking back it’s hard not to focus on all the mistakes that I made. Signs of her EPI were present from the moment she entered my life; her bowel movements were a tan color and always disproportionately large in comparison to how much she ate. Our instructor assured me that this was normal and so I never gave much thought to it. At her first annual checkup she got a clean bill of health, but had dropped an alarming twelve pounds! The weight-loss continued steadily over the next three months, which was certainly baffling but not exactly alarming. Other than a noticeable increase in her bowel movements and an occasional bout of diarrhea or vomiting Yara seemed fine.

Yara and meThroughout this I was in constant contact with Yara’s school, Fidelco. They were very sympathetic, but hardly alarmed by the weight-loss. They offered a bunch of suggestions that included adding everything from vitamin supplements and probiotics to canned dog food and raw beef to her daily meals. At her peak Yara was eating what amounted to more than nine cups of food a day! The addition of the raw beef ignited the first undeniable symptoms of EPI; Yara’s stools morphed into a bright yellow “cow plop” and she started vomiting almost daily. It was exactly the worst thing she could have had in her diet, but I’m strangely grateful that we did because it alerted everyone to how serious things were. Still, it would take nearly two months before she was formally diagnosed. She had a battery of different tests run and they all returned normal results; in fact, the GI test that determined her EPI diagnosis initially showed that she was “marginally” in the range.

By that point I was fully on board with whatever the vet told me. Yara was clearly sick! She never was as ravaged as some EPI dogs I’ve seen, but her ribs were clearly visible at the height of her weight-loss. A fact that the general public made me aware of almost constantly. In fact, there was even a formal complaint made to Fidelco! I tried not to take it as a personal offense when they sent a trainer out within a few days to check on things while for months before they were made aware of the entire situation at every interval and had been completely nonplussed.

The resounding memory of these six months is the amount of stress I was under. I felt pressure from Fidelco to take their advice against my own better judgment or that of my vet’s. This greatly influenced the length of time it took to diagnosis Yara. On the rare occasion that I didn’t side with the school it was made abundantly clear they felt that decision was the root of the problem. (I had changed her food, for instance, so that might be the culprit because she was used to the other food.) Admittedly, I took a substantial amount of time off because of Yara, but my superiors at work were largely unsympathetic. The level of passive aggression and outright punishment directed towards me probably only furthered my own health issues with chronic migraines. (So, when I needed time off because I was sick it was a Big Problem.) And I got no respite because everyone from my family and friends to outright strangers made it known how bad things were. People made a point to remark about how thin Yara was and suggest ways to offset this. (“I think you need to feed her more.”) On countless occasions I was accosted in public about my “obvious” abuse; one woman actually dragged me by the arm out of the middle of a street crossing to yell at me!

Yara and meWorst of all was my own personal struggle. I scoured every possible resource for anything that might help. Perhaps she was sensitive to chemicals and so along with her various food alterations she drank only purified water. For months. I changed all of my cleaning and laundry supplies to green products, which I admit I had wanted to do anyway because of my migraines. I went so far as to replace all of her bedding, including a very expensive bed! Thinking that she might have an allergy (which she does but that’s a whole other story) I started the long process of eliminating things one by one to determine the cause. And with every change that netted no resolution I kept coming back to one constant: me.

Part of me couldn’t believe that this was possible. I rejected the notion that I was the problem by reminding myself of her nearly flawless work in harness. But every time she refused a morsel of food or had an accident in the house I became just a bit more convinced that she was stressed out by her job. I felt like a rotten human being; I was selfish to want to keep working her and cruel to continue to do so if she wasn’t cut out for this life. Mostly, I felt like a failure. The partnership was faltering and I couldn’t fix it. I was increasingly convinced I was doing something wrong, but proud enough that I wouldn’t dare admit it. Friends tell me they guessed as much, but I never told anyone how bad it really was for me or how close I came to calling Fidelco to take Yara back. To this day I can’t tell you what stopped me. I could say I didn’t want to give up, but I did. I could say that I didn’t want to be parted from her, but that’s hard to believe when every room in the house is covered in dog sick.

Obviously it wasn’t all for naught and we made it through all of this. Yara’s recovery was very swift and though I did eventually retire her because of her health issues it actually had very little to do with any of this or her EPI. I’ve since remarked on how profoundly she impacted my life in her short working career even though we had more than our fair share of “downs.” Not that I want to repeat it, but I don’t regret the struggle. For all I know it only made the bond we shared even stronger! Mostly, it made me appreciate all the positives we had. Sometimes it was a way to distract myself from how miserable things were and other times that focus was the driving force behind figuring it all out. Together, we accomplished so much!


This post was written as part of the Assistance Dog Blog Carnival. This fifth carnival’s theme is “Achievement” and further information can be found here on the founder’s blog.

Greedy Shepherd

Heeheehee! [Via I Has a Hotdog.]

Jones

JonesThe cute German shepherd puppy you see to the right is Jones. He’s from The Royal Dutch Guide Dog Foundation and a BookCrossing member adopted him in my honor. Apparently, I inspired her (or rather a photo of me and Yara) and she wrote: “I love dogs and admire the work they do for the people that need them. And I want to give my share to the foundation to be sure that their good work is continued.”

What I find most interesting about this is that Jones is actually from New York State. His information page is a bit vague (and my Dutch is pretty much nonexistent), but I think he may have been bred at Guiding Eyes. [EDIT: Confirmed by the school.] He and his sister Jody were being fostered by a GEB volunteer until just a few months ago when they flew off to the Netherlands. Now this little pup has been placed with a foster family and I’ve been promised updates on his journey to one day becoming a guide dog.

Many thanks to Grada for the gift and Uschi and I wish Jones the very best of luck!

Charlie Kaman

Charlie Kaman

Early this morning Fidelco co-founder, Charles Kaman, passed away.

As Charlie’s health was failing for several years prior to my involvement with Fidelco, I never had the privilege of meeting him. I do know that he was a great inventor and entrepreneur and given his, and his late wife’s, impact on my life through their work, I will forever be indebted to his selflessness. I’m truly bereft of words at this news. All I can say is that I am entirely certain he will be greatly missed.

EDIT: Statement from Kaman Cooporation and Charlie’s obituary.

Yara

While I don’t feel the need to share every last detail of my life with the whole of the intarwebs, I’m not exactly a private person. So, the fact that this announcement is not news to a mere five people is saying a lot.

On June 17th I started the process to retire Yara and obtain a successor guide dog from Fidelco. It still feels incredibly surreal to me. Many of you who know me off the web and probably a good portion of you who do not but are familiar with service animals and our particular health struggles are most probably not surprised that this has been a decision I’ve mulled over for quite some time. But actually making the final decision and going forward from there was hardly easy. Not that retiring a guide dog is ever easy.

Aside from her health issues, I sincerely have no complaints about her as a guide. I won’t say that she never has a moment of distraction or doesn’t make a mistake now and again, but from that very first day in frigid Schenectady when we took our initial steps together she has always been my partner. I don’t think I can adequately express it in words without sounding like I’m exaggerating or being boastful so you can believe me or not. But so far as I’m concerned, she is without a doubt a wonderful match for me and constantly proves that she’s practically precision in harness. And it is because of these things that retiring her nearly breaks my heart.

One thing that I have mostly kept to myself was how rough that first year was while we tried to diagnosis her weight-loss and assorted health issues. There were days that I would just break down and cry because here I had this amazing working dog, but for whatever reason she was having accidents all over my apartment on a daily basis. I felt like a failure as a guide dog user because I couldn’t figure out what I was doing wrong that was affecting her so adversely. Worst of all, I felt I was being selfish for wanting to keep her as a guide and cruel for doing so when the reality of it could have been that she just wasn’t cut out to be a guide dog. At least not for me. I was so very near calling Fidelco and begging them to take her back at several points that I remain to this day shocked it didn’t happen. Especially when as I explained once before how she is when she’s being particularly stubborn about not eating.

In fact, it was only a few short weeks before she was ultimately diagnosed with EPI that my paranoia over being the cause of her issues was set to rest. I won’t say that the circumstances were especially ideal, but it was such a relief to voice the fear that Yara was possibly too stressed by the job and have a guide dog instructor calmly reply, “She doesn’t look stressed to me,” without missing a beat. And if my own inner-battle as a competent handler wasn’t enough to drive me towards the idea of giving up on our working relationship, there was also the months of going between Fidelco’s suggestions and my vet’s as to Yara’s health.1

Somehow, though, I muddled through it because I just kept coming back to the fact that she’s such an awesome guide dog. And, perhaps naively, I felt that things would get better. She would always have EPI, but once she was recovered and back to a healthy weight it would no longer rule my life. Except, it totally does. The fact is I have taken off twice as much sick time from work because of Yara than I have for myself. Rather than call in sick, I went to work all five weeks I suffered from a horrendous viral cold last year because of the pressure from my superiors to not use my paid leave. I’ve gone to work with migraines because I have practically exhausted all of my accruals, which only serves to make the headaches worse through strain and stress. I don’t blame Yara in the least for this, though; she can’t help being sick. But that fact doesn’t make it less frustrating when she stubbornly refuses to eat for days on end and then is sick from not eating and not getting the proper dosage of enzymes in her system.

On top of this she’s also developed some severe allergy issue. My best assumption is that she’s reacting to something at my grandparents’ house, since both of her major attacks have manifested after we’ve spent extended time there. I realized after our most recent trip to the vet that I can no longer risk her health and can’t bring her to my grandparents’ any longer. And the moment that thought passed through my mind, I quite literally had to catch my breath. Many times through the years I have come across two major situations with my guides in terms of taking them places: I didn’t feel comfortable bringing them with me; or, I’ve been told that I can’t bring my dog to such-and-such place. With the first, it’s always been my own initiative to determine this and has more to do with my willingness to subject them to an uncomfortable environment for them (i.e., a loud concert) or me (i.e., a job interview) or a situation where I wouldn’t feel safe working them (i.e., Friday nights during college wherein I’d most assuredly get drunk while clubbing). On the second, I usually find myself responding that I most certainly can and am eagerly waiting for someone to try and argue differently. But never have I been limited by my dog itself in where I could take her. It was with this realization that I came to the conclusion that this partnership isn’t working.

There’s a lot of good, but the few negatives that exist are far too much to handle. If she were a pet, I think I’d feel differently, but because she is a working dog her health issues greatly impact my own ability to use her as a guide dog. I certainly can’t work a dog that is displaying signs of being ill, but as I live alone I have no one else to step in to care for her and I definitely can’t leave her alone for a day while she’s sick. Frankly, I don’t want to not work her and use a cane instead or leave her in someone else’s care since as her handler that really is my responsibility. Still, the fact is that when I made the decision to work with a guide dog I signed on for a healthy animal. The expectation is that the dog will be as dependable as a white cane. And while it’s not out of the realm of possibility that a guide dog will become ill, the reality here is that I have gone above and beyond a bit of give-and-take in this respect. I don’t regret any of that: not the money spent or the time off work or the endless hours stressing myself sick. But it has gotten to a point where I have given as much as I can and it’s time to admit there is no more left. And so, the best alternative is for both of us to move on.

This is a bittersweet event, though, because there are many things I am truly happy about. One, I will be working Yara until Fidelco finds a match for me and as it stands currently the earliest they will call is December.2 So, while her retirement is pending, it is still quite a ways off. I plan to soak up as much enjoyment from this fleeting time we have as I can. Two, while there is no firm answer as to where she will go once retired beyond the fact that I am not keeping her3 there are two very viable options for a superb post-retirement home. Either of which will allow for us to remain connected! I’ll natter on that later. Most probably when there is solid news to share. And, third, as difficult as it is to let go of a guide dog, it’s hard to not be excited about getting a new dog. Even if that is still a ways off, I’m still a bit giddy about the prospects of my next guide and making a new friend.

I was going to get into the specifics on the retirement/reapplication process, but this post has gotten a might long, so I’ll save that for a subsequent post. Instead, I want to end this with a very heartfelt thank you to the handful of people who have been “in the know” about this entire situation. I was hardly in the best frame of mind before this became official. I had many qualms about this and a list as long as my arm of questions that I wasn’t sure I’d ever get answered. And without those few ears and shoulders I probably would have shattered into pieces. But just as important was that these same glorious people were around after the decision was made to listen intently to my play-by-play of the most finite details and reassure me. Everyone should be so fortunate to have such a great support system as you. <3


1. I won’t even get into the aftermath of her diagnosis here because just thinking about it sets my teeth on edge.
2. I am not entirely happy about the very real possibility of training during the winter again.
3. Much as I would love to, keeping her as a pet wouldn’t alleviate the issues of her health impacting my life.