Opie, Service Pup Piper & Girl@chronicallypersevering

Chronic illness warrior, service pup, & retired service dog living life joyfully with chronic illness

https://www.chronicallypersevering.com/shop/

Cienna: Living with multiple chronic illnesses is definitely a balancing act! Today concluded my week of testing at the Mayo Clinic in Scottsdale and I had my end week appointment with Dr. Goodman. We learned through testing that I have 3 different forms of POTS(postural orthostatic tachycardia syndrome). We knew that I had hypovolemic POTS from my low blood volume, we found out that I had neuropathic POTS from autonomic nerve damage and neuropathy, and finally hyperadrenergic which basically means my body is always making too much adrenaline. Behind all of these we believe that my Sjögren’s syndrome is fueling the fire and causing these three types of POTS. We also found out through testing that I have esophageal dysmotility that is causing my food to get stuck, acid reflux, vomiting, and other symptoms. Most surprisingly this week we caught my breathing problems or lack of breathing during some of the autonomic testing. Dr. Goodman said he had never seen anything like it before and that he would be talking to all the leaders in his field to try and understand what is happening and how we can treat this! We talked today about a hopeful future with a better quality of life and maybe someday a future that includes no passing out! We have a great plan in place and already a 1-2 week return visit scheduled in August. I may be a complex case, but I am excited and confident that with my doctors at both the Mayo Clinic, Cleveland Clinic, and with Piper’s help that there is a bright future ahead! #servicepuppiper #opietheservicedog #mayoclinic #dysautonomia #posturalorthostatictachycardiasyndrome #sjogrens #hiking #arizona #adventureawaits #sjogrens #esophagealdysmotility


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Piper: Today is a good day for a good day! My girl’s breathing problems showed up in her autonomic testing yesterday! It has been so hard to catch which makes this very exciting! Dr. Goodman said he had never seen anything like it before and that it was definitely strange. My girl is excited to learn more about her forgetting to breath on Friday at her appointment with Dr. Goodman. I have been working on getting used to kids, bikes, new dogs, and dads. I am starting to feel comfortable and even tried to give my trainers golden retriever an ear bath! Last night my girl and mom went to the Desert Botanical Garden in Scottsdale for sunset and dinner! It was a gorgeous experience and so relaxing after a day of tests. Today, my girl and mom are on their way to Sedona to meet up with a family member! #servicepuppiper #opietheservicedog #servicedogintraining #vizsla #vizslapuppy #wirehairedvizsla #chronicillness #dysautonomia #mayoclinic


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Piper: Yesterday my girl and Mom flew out to Scottsdale Arizona to see Dr. Goodman at the Mayo Clinic! My girl had a fun time sitting by the window on the plane and watching the landscape change. Today I left to spend a week with my service dog trainer so that I could continue to progress in my training while my girl is making progress with her healthcare! My girl saw Dr. Goodman today and he scheduled a lot of testing. He said that my girl was definitely a very complicated case and that they had some things to sort out. She also did all three of her autonomic tests and has those out of the way! Now for some sightseeing! Check out our Instagram story this week to see what fun things my girl and mom do in Arizona! #servicepuppiper #opietheservicedog #servicedogintraining #vizsla #vizslapuppy #wirehairedvizsla


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Cienna: For the past few weeks I have been talking about how Piper has been learning BAT(behavior adjustment training) to become more confident and remain focused on me in more distracting situations. Currently our next door neighbors are having their old deck removed and a new deck built, which has resulted in lots of noise and new people. A couple weeks ago I would not have been able to practice with Piper in the driveway with all of this going on. With all of our practice Piper confidently and happily practiced in the driveway ignoring all the loud noises and people while being entirely focused on me! One of the builders even asked if Piper was a service dog and said that he could tell that he was one by his behavior! This is the best compliment any service dog team could ever be paid! I am so proud of my little buddy and the team that we are becoming! Practice makes permanent and teamwork will always make our dream work! #servicepuppiper #opietheservicedog #servicedogintraining #vizsla #vizslapuppy #wirehairedvizsla #goodboy


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Piper: Today is 6/15! In the dysautonomia community it is known as #turn6into15 day. On average it takes dysautonomia patients 6 years to be diagnosed and the goal of this movement is to shorten that wait to 15 minutes. By educating primary care doctors and nurses on the signs and symptoms of dysautonomia and POTS @thedysautonomiaproject hopes to accomplish this goal. Doctors on average are only able to spend about 15 minutes with each patient and in that time if they know the signs, symptoms, and how to perform orthostatic blood pressure readings a diagnosis could be made. This would help patients spend less time out of work and school, less time dizzy and fatigued, less time unconscious or in bed. For my girl it took 19 years to be diagnosed even though she has had symptoms since She was born. We hope through raising awareness together we can all help #turn6into15 and #makenoiseforturquoise ! #servicepuppiper #opietheservicedog #servicedogintraining #vizsla #vizslapuppy #wirehairedvizsla #dysautonomia


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Piper: I love helping people! This past winter after a fall on the ice my girl’s 93 year old Nanny(grandma) developed post concussive POTS. She loves to do work around the yard and house, but with her new symptoms she has not been able to. Nanny’s garden is her pride and joy, so she has been feeling pretty down watching it become overgrown. Today my girl and I showed Nanny that with teamwork anything is possible. Adjusting to living with a chronic illness can be so hard, but it is important to still have hobbies that make you happy. My girl showed Nanny how she could garden sitting down, for shorter periods of time, and how they could work together to accomplish the tasks Nanny used to be able to do. I was there every step of the way sniffing for the first signs of symptoms from either of them. With all of our teamwork today was a big gardening success! Helping people makes me one happy vizsla! #servicepuppiper #opietheservicedog #servicedogintraining #vizsla #gardening #vizslapuppy #wirehairedvizsla #michigandogs


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Piper: We match! Today for our service dog class my girl and I thought we would coordinate! On days where my girl isn’t feeling good, looking good has always made her feel better at least on the inside. Our matching brought a smile to everyone at the classes face too! At class today there were five other dogs, that is the most I have ever worked around! On one side of me there was all of my friends from class and on the other side there was a playground with kids playing on it. This was the perfect setting for my girl and I to practice our BAT(behavior adjustment training) to help me be confident and focused on her no matter the setting. Each week I am getting more confident and being able to handle more things. While I was there tonight I even gave my girl a cardiac alert! My early alert and deep pressure therapy in response helped my girl avoid passing out from POTS(postural orthostatic tachycardia syndrome). In the picture I am doing dpt while my girl is sitting to help her transition back to being able to stand again. All in all it was another great class with the best trainer we could ever ask for. #servicepuppiper #opietheservicedog #servicedogintraining #vizsla #vizslapuppy #wirehairedvizsla


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Piper: Lately, I have been astonishing my girl, family and trainer with some amazing behaviors. I keep telling them I’m reading my girls mind, but they aren’t buying it. The other day my girl’s blood sugar was low, but instead of just alerting her I knocked her backpack off the counter, grabbed her scanner bag, brought it to her, and then alerted to her low blood sugar! I have seen my girl use her scanner and take it out of its pouch in the backpack, but we have never done any training around it. Later that day after passing out several times my girl decided to take a nap and jokingly told me to wake her up at 6:25(I might be amazing, but I can’t tell time). Guess what I did?! I woke her up at 6:25! Crazy right? Then my girl lost her block for her phone charger and while she was looking without her saying anything out loud, my girl noticed I started searching the room for the block and found it. This is remarkable because my girl had actually never misplaced her block before that. What can I say, I am so great at mind control that I even convinced her to name this bandana after me! #servicepuppiper #miracle #opietheservicedog #servicedogintraining #mindreader #vizsla #vizslapuppy #wirehairedvizsla


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Today was the start of my June whirlwind of medical appointments! Did you follow the day on my Instagram story? I gave sharing my day that way with all of you my first try today and it was pretty fun! Today I had an appointment with my endocrinologist where I got a new diagnosis that explains a lot! The condition is called primary periodic paralysis and occurs in about 1 in 100,00 people. It is a group of rare neuromuscular diseases that causes communication problems between the nerves and skeletal muscles in the body. My type is called hypokalemic periodic paralysis and the muscle weakness, pain, and some of my neuropathy is caused by my body randomly deciding to dump large amounts of its potassium out of my muscles and body. This explains why even though I have been on an increasing dose of potassium ever since I was little, it always continued to be low. Thankfully my endocrinologist spotted this because it can take about 20 years on average to be diagnosed(yikes). We think I have always had this, but that it is what has made my lasting muscle weakness and inability to regain muscle strength after having guillain barre possible. My doctor and I are very excited for the new treatment I am hopefully going to be starting soon and the research we are going to be doing through it, so that we can help educate the medical community and get others help too! I am so excited for this diagnosis and treatment to start turning my limitations into activation!(Opie and Piper are both at home having a great day playing) #servicepuppiper #opietheservicedog #servicedogintraining #periodicparalysis #hypokalemicperiodicparalysis #endocrinology #paralysis @clevelandclinic


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Opie: How could anyone ever say no to those puppy eyes? My girl and I definitely can’t! Yesterday Piper did a great cardiac alert and let my girl know before she passed out from her Posture Orthostatic Tachycardia Syndrome. With his alert she had enough time to lay down and get to a safe position and didn’t get hurt! Today my girl finally got to have her first saline infusion in weeks! She is supposed to have them every three days to raise her blood volume(she has low blood volume from her POTS) and help prevent her passing out, but the infusion company switched bags without telling my girl and she wound up having a mast cell reaction to the bags. The company did not believe that my girl could be allergic to the bags, but a call from her allergist set them straight! After a month she now has the right bags and is feeling a lot better! #servicepuppiper #opietheservicedog #servicedogintraining #vizsla #wirehairedvizsla #mastcellactivationsyndrome


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Piper: Tonight was our weekly service dog class and guess who came with me? Opie! My mom worked with Opie and I worked with my girl! I made major improvements on working around other dogs and being confident. All of our hard work was easily seen and our trainer was so proud of us! Opie definitely won the award for happiest dog. He was in his glory getting to practice obedience and going on an adventure. We all had so much fun that we forgot to take a picture! #servicepuppiper #opietheservicedog #servicedogintraining #vizsla #obedience #goodboy


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Piper: I’m ready for some summer fun! After my girl and I took a bite out of Lyme disease on Monday, we realized that I didn’t have my own insect repelling bandana. While out shopping today my girl found an @insectshield light weight hoodie for me that repels fleas, ticks, mosquitos, and flies for 70 washes. You can find them on amazon, but we got ours @sierratp . My girl loves finding high brand dog brands like @ruffwear there for less. Having a service dog is expensive, so we love being looking for great deals! Now with my hoodie my girl doesn’t have to worry about any pests when my service dog class is outside or when we have bonfires! Without having to be be bugged I can focus entirely on my girl and taking care of her! Summer here I come! #servicepuppiper #opietheservicedog #servicedogintraining #vizsla #vizslapuppy #wirehairedvizsla #michigandogs


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