– What conditions do you suffer from?
There is a lengthy list when it comes to the various medical issues I battle daily, but the conditions that cause me to struggle the most are Mast Cell Activation Syndrome, Dysautonomia (Postural Orthostatic Tachycardia Syndrome- POTS), Ehlers-Danlos Syndrome, Gastroparesis, and Adrenal Insufficiency.
-When were you diagnosed?
After seven years of actively searching for answers, I was diagnosed with Mast Cell Activation Syndrome in 2012. We discovered I had POTS later the same year.
– “How are you allergic to ‘everything’ but not dogs?”
I am allergic to most dogs. My service dog, Moose, is an Australian Labradoodle (this breed is considered to be hypoallergenic) and does not shed. We recently added another Doodle, Toby, to our family with plans for him to take over for Moose when need be.
– Why do you use a wheelchair some days when you can walk?
I use a wheelchair for multiple reasons, but the main reason for my wheelchair use is due to a condition called POTS (Postural Orthostatic Tachycardia Syndrome). Because of POTS, I am unable to stand or walk for an extended amount of time without suffering from a drop in blood pressure which can lead to passing out. For over a year, I was unable to stand or walk at all without leg braces (with locking knee joints) as a result of my extensive medical history. I consider myself fortunate to even stand or take steps at all because I know that things could always change instantly.
-Why do you have a feeding tube?
I rely on a feeding tube for a few reasons. I initially became feeding tube dependent as a result of having so many dangerous food allergies that I couldn’t eat, forcing me to be tube-fed on an elemental formula. I later ended up getting a different type of feeding tube to feed myself directly into my intestines. I’ve developed Gastroparesis (stomach paralysis) over the years and have to put medications through my feeding tube as I do not absorb them well enough to sustain myself by my stomach. Because my diet is so limited, I am fed formula through my tube (into my intestines) as I cannot get proper nutrition without it.
-What CAN I eat?
There’s never an easy answer to this question. Due to the complexity of my Mast Cell Disease, my safe foods and triggers are constantly changing. Although I’ve tested positive to many food and environmental allergies, I am currently (this changes frequently) able to eat certain foods by mouth. If I’m being completely honest, I can’t think of a food that hasn’t caused me to go into anaphylaxis. Even my safest foods have sent me into serious allergic reactions- it’s unfortunately just part of living with this condition as you’re never guaranteed that ANYTHING is safe. The allergy triggers change. The rules change. One day I may be able to eat something with little to no issues and the next time I come in contact with the food, I’ll find myself in the back of an ambulance. I’ve learned to cope with my circumstances despite never feeling 100% safe.
-In what ways are you assisted by your service dog?
Moose developed the instincts to alert when he was a puppy. He is able to sense when I’m going to pass out, seize, or have an allergic reaction. When I pass out and don’t have anyone nearby, Moose will find and lead family members to my aid. Perhaps one of Moose’s most helpful tasks is his ability (and willingness) to carry/transfer medications up and down the stairs to speed up the process of treating any problems that arise. Moose gives me a sense of safety that I’d never had previously- I value the peace of mind and comfort he provides me more than anything else.
-How did you get your service dog?
My parents surprised me with Moose when my health began to decline in 2012. He originally was just going to be our family pet/companion, but we discovered that he was extra special when he started alerting to my various medical problems when he was just a puppy. Moose’s behavior would suddenly become erratic when I began to decline- it took us a while before we understood that he was trying to warn us that I was about to need attention. When he led my mother to me, unconscious on the opposite side of the house, we immediately decided to proceed with Doggie School to prepare him to become my service dog. We trained him ourselves with the help of a local trainer.
-How do you keep a positive attitude despite your unfortunate circumstances?
I’ve always thought that it’s easier to laugh than cry. I am going to live with these conditions for the rest of my life whether I like it or not, so I’m going to make the most of it. I am incredibly thankful for my amazing support network- I have no idea what I would do without my family and friends who never fail to make me laugh when I’m struggling.