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Petra's Path to a Poodle (Service Dog)

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Summary:  

I have a chronic illness called dysautonomia. Dysautonomia is an autonomic nervous system disorder. It can affect anything that the ANS controls, including blood pressure, heart rate, digestion, and temperature regulation. My worst symptoms are fainting and temperature regulation. I overheat way too easily. I pass out as many as eight times a day. Because of this, my energy is almost nonexistent at times, and I have a lot of trouble getting up by myself. I need to sit down a lot, but it's hard to get back up. My illness prevents me from being able to do normal things. Even if I can do something one day, it doesn’t mean that I can do it again the next day. A service dog would greatly improve my quality of life. 

She would:
* help me walk,
* provide counterbalance with a rigid harness handle,
* help me get up and down stairs (railing isn't enough),
* pull me off the floor when I need to sit or after I pass out,
* pick things up so I don't have to bend over,
* provide forward momentum,
* remind me to take my medicine, and
* retrieve things across the room.

These are only some of the things my service dog would help me with.

Having a service dog would mean that I would have to take care of someone other than myself. I’ve learned that focusing on someone else helps me mentally and keeps me fairly active. It would mean being able to avoid running into things and to avoid going without water because I have no energy to walk across the house. It would mean feeling like I could go out and do things. It would mean that I could be less reliant on other people and go places by myself.

I can't work right now, and I might not be able to for a while. Service dogs are expensive even if you don't go through an agency. That's why I am fundraising. My plan is to get on disability and move out on my own so I can get a puppy and start training. Hopefully, that will be soon. My plan was to go to school to become a professional dog trainer, but that's going to have to wait. I love researching about training, and I can't wait to start training my service dog with occasional help from a professional trainer.  

The Details:

I have a chronic illness called dysautonomia. Dysautonomia is an autonomic nervous system disorder. It can affect anything controlled by the autonomic nervous system, including blood pressure, heart rate, digestion, and sweating. There is no cure for this illness; there are only treatments like consuming salt and drinking lots of water to increase blood volume. The only problem with that is some patients can't properly utilize all that water and have to receive saline infusions. Some patients have found that beta blockers can be helpful, but most of the time, you're helping one symptom while making another worse. 

My symptoms include presyncope, fainting, extreme overheating, running a low fever, not sweating, pooling blood in lower extremities, brain fog from lack of adequate blood in the brain, weakness, nausea, digestion issues, stuffy nose, and dilated pupils. I currently pass out up to 8 times a day. One time at church, I passed out and hit my spine on a door handle, which hurt a lot. I have passed out on stairs and into people's arms. I pass out if I yawn too hard. Several years ago, I would get nauseous every night. I still do. I haven't tried nausea medicine yet, but eating something slightly helps even though I'm not actually hungry. My blood pools in my feet after standing for a while, turning my feet purple or red.

I believe I've always had dysautonomia. It's just gotten progressively worse. Within the last couple of years, my vision would go black and I would sway whenever I would reach for something or bend over. I thought this was normal, but it kept getting worse. At work, I would have to ask for help reaching something even though I could technically reach it. I thought this was hypoglycemia, but my blood sugar was normal. I then started passing out if I exerted myself. I went to the doctor and told him about my vision going black and passing out and my heart racing. He told me that all teenagers experience this and to not worry about it. So I told myself that it was normal, and I tried to ignore it. Then, I would only pass out a few times a month. As it began to happen more often, I didn't know what to do. 

In the fall of 2019, I started taking medicine for an unrelated issue. Only a few days later, I was sitting down doing nothing strenuous, but my heart was racing so bad that I was out of breath. I was used to experiencing that but not when sitting still. I called the doctor that prescribed the medicine, and we agreed that I would no longer be taking it. They told me to go to the emergency room. In the ER, they tested my heart rate and blood pressure lying down and then standing up. The increase was too much. They told me that I was dehydrated and said I'd be better after fluids. They pumped a whole bag of fluids in me, but there was no change at all. They referred me to a cardiologist. 

The cardiologist did an echocardiogram and an ekg. He gave me a heart monitor to wear for a month and put me on a beta blocker. He also told me to start wearing compression socks. The monitor had a device with it to log my symptoms. At this point, I was still working a couple of days a week, but it was very hard on me. I had to take everything slow and sit whenever possible. I stopped driving. I started doing research and found out more about dysautonomia (I have a friend who has it). All the symptoms matched. It made sense. But there was still a possibility that there was something physically wrong with my heart. I went back to the cardiologist to discuss the monitor and echo results. He told me that there was nothing wrong with my heart and that it might be anxiety. He told me to go back to my primary care physician.

My primary doctor did some tests. I don't have a thyroid disease, and I wasn’t anemic. They referred me to another cardiologist in Huntsville. This doctor told me that it could be chronic dehydration. I told him that the beta blocker was not helping, and he told me to stop taking it. He prescribed a gallon of water a day and salt tablets. I asked if it could possibly be dysautonomia. He said that if the water didn't make me better, then he would refer me to a clinic in Birmingham that specializes in dysautonomia. He diagnosed me with orthostasis. 

“Condition: Orthostasis or orthostatic hypotension (OH) is a decrease in blood pressure that happens soon after standing or sitting up. When a person stands up, gravity causes blood to pool in the legs. This reduces blood pressure since less blood is circulating back to the heart to pump.”  

This was in January 2020. I gave up what little caffeine I would normally drink and started increasing my water intake. I got up to almost a gallon, but I couldn't hold a full gallon. It would cause me to feel extremely nauseous. I took a salt tablet every day, which was supposed to help me retain more water and be more thirsty. :-) Eating chocolate makes me really thirsty, but chocolate doesn't need to be in the blood stream.:-) The water didn't make me any better; it just made me sick. 

Then the pandemic hit. We called the doctor to tell him that the water wasn't working and to ask if we could just get that referral to the other clinic. Later, we had a phone appointment with the new cardiologist. I told him all of my symptoms, and he diagnosed me with orthostatic intolerance, which is a type of dysautonomia. He told me to keep drinking water and to eat salty foods or take salt tablets. He gave advice about developing leg muscles to help prevent the blood from pooling. That will be hard because one of the symptoms is exercise intolerance, and no, I'm not trying to be lazy. He ordered blood tests because deficiencies in anything could be making my symptoms worse. My iron was supposed to be 30, but it was 12, so now I am taking iron and vitamin C to help my body absorb the iron. I am currently waiting for an in-person appointment for further testing. 

I follow a lot of people on the internet with this illness, and they manage their symptoms in various ways. Lots of them require the help of a service dog. There's not much medicine that helps. Nausea medicine and lots of vitamins help a little, but there's no medicine that just turns off the symptoms. Some people have milder symptoms, and some people don't ever pass out. Unfortunately, I'm not one who has only mild symptoms. I can't walk across the house most days. When I do, it uses so much energy that I have to rest, and I might fall or crash into a wall. Going out in public for a bit exhausts all of my energy, and I feel miserable.  Just getting up to go to the bathroom is exhausting. This is how I feel every day now. Some days are better than others, but doing regular daily activities like showering or getting my own food is difficult if not impossible most days. Stairs, shopping, and chores are really hard for me. A service dog would greatly improve my quality of life. 

She would:
* help me walk,
* provide counterbalance with a rigid harness handle,
* help me get up and down stairs (railing isn't enough),
* pull me off the floor when I need to sit or after I pass out,
* pick things up so I don't have to bend over,
* provide forward momentum,
* remind me to take my medicine, and
* retrieve things across the room.

I had been planning to go to school to become a dog trainer. I love reading about training techniques and practicing them. For now, going to school is on hold. I have a six-year-old dog. I started training him this year to help me get to the bathroom and back and that really helps. I started training him to do more things, and my family and I would go on walks to train him. He's improved a lot, but he's half Jack Russell, which is a stubborn breed. He barks at cats and other dogs and refuses to listen sometimes. Depending on the dog, service dogs are fully trained after two years. They usually retire around ten years old. So if my dog had the temperament for service work, I would only have him working for about two years. That's IF I could train him for this, and that road hasn’t been easy. 

I am prepared to train my own puppy, one that is better suited for service work. I've done a lot of research on standard poodles. They are the second-smartest breed, they don't shed, and they are a perfect size for me. I can't wait to start training my service dog. Again, it’ll take approximately two years, so the sooner I can get this puppy the better.  

I have found a really great trainer down in Florida who works with owner trainers. All of the trainers I have found near me only do board and train for more challenging training. This trainer also has dysautonomia. They offer four-day training, and for this additional training, I would need at least $2000 to cover the expense, including the cost of traveling down there. 

For fundraising I am doing an online auction starting on December 1st with donated items, t-shirts, and GoFundMe.

Fundraising team (2)

Petra Pack
Organizer
Sheffield, AL
Sara Pack
Team member

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