Written By Amie Chapman
Pixie is now approaching an age where most service dogs in training (sdit) are working on learning specific task skills they will need to aid their partner. We are now ready to make some big decisions on Pixie’s future, and it is not what we were imagining, or expecting when we originally started the process of raising her. This is a bit of a long read, and I am taking a little bit of a risk, and opening up about a very personal journey; here I go…
When we started our journey raising Pixie we were not sure what our plan was or what the outcome would be. We embarked on new territory and for the first time we were on our own to make decisions and work through issues that came up. Pixie belongs to Growing Up Guide Pup (GUGP), not another organization, nor was she promised to a specific organization. I was excited but I was also nervous at the same time.. I really wanted to step out of my comfort zone and do more than just the basics of what most puppy raisers do, but I had no idea if I could actually do it on my own. Pixie is a bit of an experiment for us.
When Pixie’s litter was born we whelped all nine of the puppies and the original plan was to raise one of the two puppies being donated to Brigadoon Service Dogs. I had my eyes on chunky boy Mr. Yellow, who was later named Paddington. Don’t tell Pixie, but she wasn’t my favorite of the nine in the beginning, but she was always a little unique due to the fact she needed extra attention, including bottle feedings, the first couple of weeks because she was the smallest and not thriving as well as the others. Because she had some special needs in the beginning of her life, we offered to keep her and take on the responsibilities of what she needed, or may have needed, as she grew. At the time we were uncertain how she would develop physically. Turns out she did just fine, being the runt of the litter, she just needed a little extra attention as a baby.
My original thought process was to see what Pixie did naturally as she grew up and then make a decision on what type of service dog she would be best suited for. That would help me decide where she would potentially go for formal training and placement at a service dog organization or if I would try training and placing her myself. Early on I thought she would make a great medical alert dog, she was very interested in different smells, especially with people. Diabetic alert was high on my possibility list. She likes to smell my breath in the morning, and if Matt or I have any type of cut or scab on our body, she finds it and wants to investigate it every day until it is healed. She does this also with other people she meets or friends she greets, she always wants to give everyone a full sniff over and investigation.
So where does Pixie go from this point? What will she be training to do? That is the big question. In October 2019 I did get some new gear to try out with Pixie. We have been working on some momentum pull work and some light balance assistance. Now these tasks are a little different than what the natural instincts that I have described above and I’m going to explain why we went this route.
We have found a potential placement for Pixie where she can utilize these skills that she is learning. Where we are placing her was the last place I thought that she would end up when we started, but it seems to be the most fitting now for everyone involved. If it all works out, and Pixie can get past her training obstacles, it will be quite the story to share. You see…we have decided to try placing Pixie with me.
So far only Matt, my family, a few friends, and my coworkers know about this part of me. In June 2017 I was diagnosed with a benign tumor on my pituitary gland. At first I had very few symptoms and didn’t have a huge impact on my life. I was prescribed some medication to help shrink the tumor and help regulate my one hormone level which was out of normal range. Even my endocrinologist made it seem like no big deal. Unfortunately I had a lot of side effects to the medication and I was never able to take the full dose that was prescribed. Because of the lower dose I was taking it took almost a year, but my hormone levels were finally stabilizing a few months before Pixie was born and was able to taper back my medication, but was still experiencing some side effects.
Because there was so much going on that summer I stopped my medication. We had 9 baby poodle puppies and a mother to take care of, Oscar, our young puppy in training to work with, two pet dogs that needed their usual care, my full time job at the clinic, Matt’s work, some side jobs we engaged in to help pay the bills, in addition to a few extra canine house guests coming and going throughout the summer that we had already promised that we would take care of before we agreed to whelp the puppies. My biggest side effects from my medication was being tired and mental fogginess that caused me to be forgetful and unable to really use my brain the way I needed and wanted it to be. The more tired I became, the worse my symptoms were. There was so much to be done each and every day that we were up and busy from 7am until about 2am. There was no room for being extra tired or unfocused from an outside source, my health, to get through the work needed to be done at home and still be focused while at work. There is really no room for error in my line of work and I had to be able to function at both home and work.
After the summer of 2018 most of the puppies were gone and things calmed down some, but then we had both Pixie and her sister Scarlett to try and train individually (before Scarlett went to Brigadoon) and Penny was returned to us and that added a third pet dog that needed care. I didn’t really get back onto my medication until well after the holidays and I struggled with staying on them. I felt really crappy on them so I wasn’t very consistent with them. The medication made me feel worse than the tumor did and it was really hard for me to keep taking it. I was taking it on and off, but it was enough consistency to make a difference.
Over this past summer I tried to be more consistent with taking my medication and I felt the worst I ever had. I was exhausted all the time, no matter how much I slept. I would feel worn out like I had done a major workout at the gym just walking the dogs around the neighborhood. I was lightheaded and dizzy at times and was not comfortable standing still and really just wanted to sit all the time. The best way to describe it is that I felt like I was “buzzed” as if I had been drinking all the time. Not drunk, but tipsy. I was also becoming forgetful. I would forget things at home that I needed for the day, or things I needed to put on my to do list. I was also forgetting words. Like when I would be talking to someone, I knew what I wanted to say, but I struggled to get the right words that I wanted out. The interesting thing is that Pixie seemed to notice that there was something off with me as well.
When Pixie is at work with me she lays under a desk where there is a computer that is used by multiple people throughout the shift. She has always been quiet and stayed in her spot without being noticed. She hardly moves my entire shift, with the occasional “I need to potty” look. Over the summer there were a few times while I was sitting at the desk she hit me numerous times with her nose, a behavior that she had never done before. She was also starting to lay out from under the desk where she could watch me more. At first I thought she was just being persistent that she needed to potty or that she was bored and ready to go. These things usually happened when the clinic was really busy and I was running around more. But I did also start noticing that I was having dizzy spells and feeling off balance while at work. I started to wonder if Pixie was actually trying to tell me something that was about me and not her. She has always been very attached to me, but there were multiple times that she outright refused to leave my side, or was very uneasy if I did. Some days she follows me almost everywhere she can. Even if I go to use the restroom at the clinic which is five steps away from where she stays she will paw at the restroom door while I’m inside (when she is not hooked to a tie down). There can be multiple other people in the room with her, but she still follows me. At first I just felt like she was a needy puppy, but now I wonder if there is something more to it.
Pixie sticks very close to me also while at home. If I step outside she jumps up to follow. If I go upstairs, she insists on coming with me. We have a baby gate at our stairs and there have been times that Pixie has climbed over the gate to get to me. This happens even when Matt is home and downstairs with her. When I look back and remember Penny’s training; she has also been very clingy to me. But never to this extent. There are some days when there is a little competition between the two dogs regarding who can be closer to me.
I decided to try being off my medication again to see if this was all side effects due to the medication or if there was something more going on with me. I didn’t take my medicine for a month and I did feel a fair amount better. I wasn’t as dizzy and foggy brained, but I was still waking up not feeling rested and chronically fatigued. I was also still feeling off balance at times as well. When I stood still for more than a few minutes I would feel my feet rocking and would be slightly adjusting constantly. I swayed very subtly. I felt better sitting or leaning against something. I was always looking for a place to lean on when standing. Pixie stopped with the nose bumps but was still keeping an eye on me after I acknowledged that something wasn’t right with me and started adjusting my routine at work. I tried different things to see if I could figure out what was going on with me. I was keeping track of my blood pressure in case I was feeling tired and off balance because It was low. I typically run on the lower side, but not low enough to explain my symptoms. I tried eating more frequently in case my blood sugar was being affected by the hormone imbalance or the tumor itself. It helped slightly, but it was time to visit the doctor again and figure out why I was having increased symptoms and what was causing it.
Since September I have seen my primary doctor, my endocrinologist, opthamologist, and a rheumatologist. I have been tested for numerous things, but with almost all negative results that didn’t give us more in the way of answers. My repeated MRI showed that my tumor had grown some, I have an increase in my EAR (erythrocyte sedimentation rate) test which just tests for overall inflammation and my prolactin hormone level over 200 points higher than it should be. I recently started a different medication to help lower that hormone level and shrink the tumor with the hopes of less side effects.
So far I am tolerating the new medication much better, but still suffering from the chronic fatigue, headaches, and feeling off balance and sway at times. I am also noticing new symptoms of joint pain and stiffness as well as muscle soreness. I am still uncertain how much of this is caused by the medication or the tumor and hormone imbalance. For awhile I thought that I was becoming lazy or I was imagining the problems. I talked to my doctors about my symptoms, but I really didn’t get the answers as to why I felt this way, nor did I feel like the doctors took my concerns about my symptoms seriously. I was just passed around from doctor to doctor. For a little while I thought that I had just made up these symptoms in my head since the doctors never verified that they were actually real. However I was able to find a great support group online with people who have the same condition that I do. I found out I’m not alone. I am amazed by the variety of symptoms that people have from such a small growth. People suffer from everything from fatigue, where they can barely get out of bed, month long migraines, vision loss, dizziness, mood swings, depression, anxiety, multiple hormone levels out of normal ranges, hot flashes, cold sweats, vitamin d deficiency, osteoporosis, weight gain, and other things. I actually feel pretty lucky that my symptoms are not more in number and not worse in severity so far. So many other people talk about so many different symptoms and how they affect their life, and most of them are not recognized, mentioned or talked about by most doctors or literature on the topic. Being able to ask questions to the members of my group and seeing what other people go though I have a better understanding that the tumor itself, constantly changing hormone levels, and medications all can affect how I feel and that how I feel changes from one day to the next.
My most recent Dr. visit was to a holistic doctor, and for the very first time a doctor took my symptoms seriously. He noticed that I sway when I stand still. He noticed that I am off balance when I walk (granted not always, this comes and goes). He even discovered that one of my eyes wasn’t working as it should (yes I have seen an opthamologist in the last few months as well), and that I developed a nystagmus if I focus on something moving at a rapid pace.
So where does Pixie fit with this? Well Pixie is still a bit of an experiment. I have been testing out the momentum pull with her to see if it helps me conserve energy and to allow me to do more. Right now I have just enough energy to get through going to work and not much else, although my new supplements from the holistic doctor seem to help some. Some days it is hard for me to make it through an 8 hour shift, other days I make it through just fine. Then there are times I need to push myself to “power through” my commitments. If I do more than I can handle in a day, the following day, or even the next, I feel completely exhausted and almost hung over. My whole body is tired and achy. Every morning Pixie is let out of her kennel by Matt and she hops up on the bed to sniff me. Some mornings it is a quick sniff and she is off to go potty and be fed. Other mornings it is a long sniff followed by laying down next to me. Matt will call her to go downstairs and she refuses to budge until I get up. Nightime can also be similar. She will sometimes cuddle with me on the bed and as Matt comes to bed she will hop off and go right into her kennel without even being asked. Other nights Matt will tell her to “kennel” and instead of jumping off the bed she will get up and then sit on me and refuse to budge. I have not been able to figure out why she does this, but I do feel like she is picking up on something going on with me. Is she trying to alert me about something? Can she pick up on inflammation happening in my body? Can she sense my hormone levels changing? Or even pick up that I will get a bad pressure headache before it happens? I have recently started to keep a log of when she displays different behaviors. I write down how I feel at that point in time and then I write down how I feel later in the day to see if I can connect the dots.
We have taken a few scent work classes recently and have learned the fundamentals of teaching a dog a specific scent. So if I can figure out what Pixie might be picking up on, I can figure out how to teach her an alert and help me better predict when I may be having symptoms arise and how they may affect my day and make the appropriate adjustments on a worse day. I think I may need to make adjustments before I overdo it. Then I could find time to recoup. I seem to only have so much battery power and some days that power runs out sooner than expected.
I really have no way of knowing if my symptoms will stay the same, change in severity day to day, or if I will develop more symptoms. I did have a good laugh one night at work with my coworkers when I misjudged a turn into a doorway and completely missed and turned right into the wall. My coworkers said that I need to walk with Pixie more often so she can keep me safe. Usually I catch myself before running into anything when I turn too quickly and feel off balance.
My days off from work seem to be recoup days. I can easily spend an entire day in bed and still feel tired. While there are times that I have felt that Pixie has helped, she is still very young and learning. It is a bit of a double edge sword at the moment. Some days she is on point and helpful, other days she struggles and it is more exhausting to have her with me. If every day was a day that she rocked it, I can totally see her making an impact in helping me conserve energy for being able to do more in a day. But she is still a work in progress. I can’t expect her to magically be perfect all the time without putting in the work. Unfortunately Pixie’s training has slowed down a lot because of my lack of energy. If she is to officially become a service dog, it may take her a little longer to get to that level. She still has some issues to work through and skills to gain, but I still feel with some time she can get there. Progress is not really her fault since she is not training every single day. She has gained so much confidence lately that she rarely barks at things like she used to. She is slowly but surely gaining self control when she sees birds, small animals, and kids playing. I feel like if she was training every single day to work through the things that are a challenge for her we would be further along. But the important thing is that she is still improving and trying her best.
I do think Pixie has what it takes to be a service dog. She just needs to get past her only big hiccup which is her alert barking at other dogs. If I can get her past that, I think she can totally do this. Some trainers that we have taken classes with have said that her bark is most likely a fear bark. As a young puppy Pixie was very fearful of many things. She has overcome most of her fears with very little work. She has just needed time and to be able to move at her own pace. I am hoping with some more time and maturity she will continue to gain the confidence she needs to not alert bark at other dogs.
There are times that we are out running errands and she just knows what I need from her. The amount of pull she gives is perfect and sometimes I think she can read my mind. Once a week we take public transit to work and it takes us 2.5 hours to do the trip. Pixie knows the route and is a total pro at riding the Bay Area version of a subway (a good portion of it is above ground) and the train. I don’t even have to really give her any directions anymore since we have done it so many times. The other day we went to a grocery store to grab something real quick. It is a location that she has never been to before. There were 3 different doors to enter and she somehow knew exactly where I wanted to go, and without any guidance from me. She just took me to the door that I wanted to enter. When Pixie is “on” I can relax and not have to concentrate on where I am going or what I am doing as much. I don’t know how she knows, but somehow she knows where we need to go. I can’t really explain it into words on how this helps me, but it does. It seems like some days I have to concentrate so much harder to get through normal tasks and that too, can add to the mental exhaustion. This is something that she has just naturally picked up. Sometimes I just need to tell her simply right or left and if she could talk she would say, “ok, got it.”
Making a decision as to where Pixie ends up now is more than just a decision about her, it is making decisions about myself as well. Can I justify keeping her for myself? I know my disease is impacting my life, but I am still able to do most things. Is there a difference between having a disability and being disabled? Do I really NEED Pixie? I am not dependent on her, but yet I do think she might possibly be able to make a positive difference in my life. This is where I am struggling most about a decision. Can I justify needing and using a service dog for myself? Yes, I have had to make adjustments in my life, but I am still very functional. I have always said to myself, if I was ever in an accident that would cause me to be disabled that I would totally want to have a service dog. But I never really considered an illness would affect me enough to require one. She can’t exactly help me much at my job because of the nature of the work, but in other aspects of my life she can. Then I question myself about her being a “part time” service dog because there are times that I will have to leave her at home while I work because she can not always be with me for certain jobs. Will people judge me because she isn’t always with me? But then I think of other people I know who don’t always need to use their “medical equipment” like wheelchairs, or walkers all the time either.
I have needed to make some adjustments at work to help get through shifts. If I am to assist with a long surgery, I know that I will need to sit instead of stand during the procedure. I noticed during a recent surgery that I was monitoring that I was not only focused on my patient, but very focused on the amount that I was swaying too. I have to be very careful not to touch anything that is sterile in the room and if I sway just a little too much, I can touch something I shouldn’t. I was very mentally exhausted after that surgery and that made me realize that there will be times that I will have to say that I need someone else to go into surgery to monitor instead. During downtime at the clinic I tend to sit more and find projects that I can do that are not as physical as well. I do work with some great people and they have all been very understanding that some days I have limitations on what I can do now.
I honestly would never have even considered keeping Pixie if it had not been for us doing our Invisible Disabilities episode when we were raising Patrick. While interviewing service dog users for that episode I learned so much about the different uses people had for their service dogs. I never fully understood momentum pull and the reason for using it until those interviews. Without learning from people who were gracious enough to allow us into their lives to interview them, I would never have known ways that Pixie could potentially help me. I am forever thankful to all the people involved in making that episode happen. You never know when you will benefit from experiences in your life.
Although I am still coming to terms with the changes in my life I think I am going to hang on to Pixie for a little bit and really see what help she can provide. I know that many people have been getting curious about where Pixie is going to end up. Recently we have been working on the momentum pull. At times she pulls at just the right amount. It really feels good on my body. I am also teaching her to stand still next to me. Her harness has a light balance handle on it and when I’m out shopping and/or standing in line waiting or standing around having conversations with friends, I have something to hold onto that helps with decreasing the swaying (I don’t need much to feel more comfortable), hopefully that will help some with my shifting feet and make me feel more comfortable.
There have been a few gatherings recently where everyone is standing around talking. I want to join in, but I also want to sit. When I sit, usually the chair is slightly away from the group and I’m no longer a part of it. I don’t want people thinking that I’m antisocial or forcing people to cater to my needs. But then there is a part of me that thinks this isn’t enough of a need for a service dog. Again, I can still do most things, but I have needed to make some life adjustments.
Matt has also made life adjustments to make my life easier. Matt picked up duties that I am too tired to do. He is the one to get up to potty and feed the dogs, as well as get them ready for bed. He makes sure they get long walks when I can only take them for short ones. I am not nearly as active as I once was, and I tire must faster than I used to. I am also not as agile as I once was. Being a shorter person I have spent my life climbing on stools, counter tops, and shelves to reach things. But more and more I find myself thinking…”yeah, maybe this isn’t such a good idea to stand on this”. Together Matt and I are navigating the life changes, but even he has seen Pixie when she is in the moment and being helpful. Even many of my coworkers have said “yea, we all knew you were keeping Pixie, even when you said that you weren’t”. I guess our bond is very recognizable.
But time will only tell how Pixie develops. Time will also tell how I change or how I don’t change. Based on the information I have gotten from others with this condition it looks like there is no quick fix and it is a bit of a roller coaster ride. It may take a few years to shrink the tumor, or it may take multiple years. The tumor may shrink and I can go off medication completely, or the tumor can come back and require me to go back on medication or stay the same. My symptoms may get better, may get worse, or stay the same. One day can and will mostly likely be different than the day before and the next day after. Even having it surgically removed is a possibility, but that can have major complications and have a high rate of return.
My condition is not life threatening, but it has been life altering. Each day I am learning more about my illness, what to expect, and how to handle it. I’m still trying to figure out if I can predict a pattern to what will cause me to be more tired physically or mentally tired, so I can better plan my activities. I know the more tired I get, the worse my symptoms get. Chances are there will not be a pattern, hormone levels change day by day, hour by hour. I might be feeling different now, and I get frustrated that I can’t do as much as I used to, or struggle to get the words I want to say out of my mouth at times, but I will not let my illness define me or keep me from trying to achieve my dreams. I believe things happen for a reason and there was a reason Pixie stayed to be raised by us. Service dog users are often told to trust their dog. Part of me is trusting the dog, she seems to be trying to tell me something and that she wants to help. So Pixie, let’s take this experiment to the next level and see where we end up. This may be the beginning of a team that no one saw coming, not even me.