Meet the face
behind the posts

  I'm 49 years old & have 4 amazing kids (chronic illness warriors). All of whom also inherited this thing called Ehler's Danlos Syndrome (EDS) Postural Orthostatic Tachycardia (POTS), Mast Cell Activation Syndrome (MCAS) & many of it's other linked/comorbid disorders. My health suddenly took a major turn for the worse in 2017. While my major issues hit later in life, our kids have suffered & fought for answers & a diagnosis since the start. In 2017 I went from being very physically active, hard working, & independent to a fault, to losing my job at the order of my doctor, being termed disabled, finding myself walking with a rollator (walker on wheels), to a part time manual wheelchair, & then to a custom powerchair & needing to use it more often than not. After a life time, we all finally received our diagnosis in 2018. I can't begin to tell you how happy we were to at least have answers!     For those struggling to find a knowledgable doctor who can diagnose these disorders, I highly suggest joining facebook groups for each suspected health condition & request doctor suggestions for your local area. If you pick random doctors you may never get your answers as these disorders are not well known, highly misunderstood, & highly misdiagnosed. 
  EDS is a heraditary connectivie tissue disorder in which we produce faulty collagen. There is collagen in the majority of the body so EDS affects pretty much everything. I wear many braces 24/7, but would have to be in a full body cast to prevent all disocations & muscle strain from happening.  Some days that sounds tempting, lol.
  POTS is a type of Dysautonomia which is a dysfunction of the Autonomic nervous system meaning that all of our automatic functions have a mind of their own. We have severe trouble being on our feet due to blood pooling. Gravity is our enemy.
  MCAS causes extreme allergy type reactions which can include anaphylaxis. We can even be allerggic to our own sweat or to direct sunlight. There are medications that help many, but some are never able to gain any type of control. Personally Cromolyn has been my life saver, but I still struggle.
  There's many comorbid/linked disorders that can/do go along with these. Our kids & I have many other health challanges such as Seizures, Asthma, Heart attacks at early age, Lung damage, IBS, Diverticulitus, Tracheomalacia, Laryngeal spasms, Vocal Cord Dysfunction, Degenerative disc disease (DDD), Craniocervical Instabilty, Strokes, early onset Arthritis, Cerebral Palsy, & more, but together along side my wonderful husband, we face each day together. 
​  I spend much of my time researching & quickly learned that in this life of chronic illness that you have to become your own advocate. I love doing art & crafts when able, such as pencil drawing, woodburning (Pyrography), & recently have taken up learning to paint. I also have a Cricut machine & enjoy making awareness shirts, decor, gifts, & such. 
  I'm a huge nature lover so I have been planting as many things as possible around our little nature barren home. Weeding has become more challenging though as I often get dizzy or near faint when attempting to get up after leaning over. When weather permits we all enjoy going out into the nature parks in nearby towns. Being among the trees really helps me to ground & regain my focus & my peace. 

  I lost my first (self trained) service dog in training (SDIT) at an early age (She was less than 2 years old) to extremely aggressive liver cancer in summer of 2020. My depression hit harder than ever, but now with the help of a wonderful local trainer, I currently have another SDIT. She is a two year old, long haired German Shepherd & her name is Bridget. We adopted her from a nearby rescue & she is definitely rescuing me in return.