🦓 I am joining the EDS Awareness Month Challenge – May 2020.
Day 01: Meet Me! – I am Cass! I’m 27 years young, a mama to an 1.5 year old son, Griffin, and a wife (& best friend) to @calebrobnson. I live in Austin, Texas and work in a laboratory as a clinical research assistant and have spent the past month working with microbes to test the efficacy of preservatives in cosmetic products. I graduated in 2017 from Texas Tech with a degree in biology. (Wreck’ Em). My favorite past time is Netflix and Paint. I love doing custom work to create artwork for nurseries. I am a pug and sphynx mama and my fur (& furless) children bring me so much joy. My husband and I go hard at Modern Warfare (gamer tag: motherpuggy) – we play on the weekends and evening when I have energy. My favorite things besides my babies, are Diet Coke, pad thai, sour candy, burritos, tiny houses, modern interior design, tattoos, Harry Potter (and all other geeky series) and scary movies. I have Ehler’s Danlos Syndrome along with comorbidities of Chiari Malformation (brain surgery in 2015), Mast Cell Activation Disorder, and Undiagnosed GI & autonomic issues. I live with chronic debilitating pain in my neck, back, and knees and suffer from frequent dislocations. Despite my conditions and prognosis, I still have a fighting spirit and aim at being the best mom I can be. đź’„
Some fun facts about me: I’ve lost about one-hundred pounds since 2013, my husband and I met and got married within two months of knowing each other, & I grew up as a military brat and lived in several different places including Cuba!
I have to report some ups amongst my many downs. First and foremost, I have a new addition in my life: Mavis. Mavis (pronounce Mahv-is, not Mae-vis) Odessa is my twelve-week-old Puglet, who is the light of my life. My parents and my boyfriend all went in to gift me my tiny biff for my 23rd birthday. From about the age of six-years-old, I have obsessed over the idea of having a pug. My parents were always against it, so it never became, until now. We first met her on February 6th and then picked her up on March 6th. I am currently training little Mav to be my service dog with the help of Lelah Sullivan’s 
e a nap. I could feel it pulsing in the vein that resides smack dab in the middle of my forehead. Naturally, I had to capture a photo to document the intensity my vein had trying to escape from my face. I mean wow, I’ve never seen it like that.
, parents, brother, niece, sister-in-law, and boyfriend as I confronted the heartbreaking loss of my grandma. I held my darling niece the entire time. She looked up at me with tears streaming down my face and her little confused look made me smile because she was so innocent and pure and knew nothing of pain. She couldn’t comprehend what was going on, only that her daddy and auntie and her loved ones were crying. She felt a teardrop on her hand and pointed at my eyes. She began to say something, but was quieted as it was during the service. I can only imagine she was going to say why are you sad, or why are you crying Aunt Cass? She definitely helped me with the loss because I felt so much love. I am not a mother, so I don’t know the entirety of the love a mom has for her child, but I do know how much I love my niece. I would easily die for her in heartbeat. Unconditional love felt instantly. I am lucky to have my family. My mother, father, aunts, uncles, my brother, who has completely changed from when we were children into a loving father and husband, my sister-in-law (who is eight months pregnant with my second niece!), my niece, Emelia, who is the best behaved toddler I have ever met and is genuinely kind and caring and full of life, and my boyfriend, who reassures me everything will be okay and puts up with my many moods of sadness, anger, and happiness, that interchangeably occur at various times of the day. I am lucky to have my grandma in my life, who made the biggest effort to see my brother and I as children, despite us being a military family, and I am lucky that I got to live in Texas for the past seven years to see my grandma more often and connect with her (and my extended family) for the remainder of her time on earth. After she was placed to rest we had to part ways and head back to Waco for my MRI. It’s hard to “snap” right back into normal life again. It doesn’t seem normal. Nothing seems normal.
een with some decompression surgery photos). I understand this is an esthetic pleasure, but it meant a lot to me to keep my self confidence through this and my hair, for me, is a source of my femininity and creativeness (I like to style it [when I’m not totally exhausted {so hardly ever}]!)
w how to differentiate what is being caused by the chiari malformation and what is being caused by the tumors. They can either try medication, embolization (Stop blood flow), use radiation therapy (which I do not want), or surgically remove the tumors. This is not related to Chiari at all and having them on the spine is extremely rare. I will most likely have to have these removed in addition to my decompression surgery
I made my way down to Houston, again, yesterday to be cleared by the cardiologist for surgery. Since I had atrial fibrillation last year, my neurosurgeon wants to definitely make sure my heart is ready for surgery. I had an echocardiogram and an EKG done while I was there and consulted with Dr. Stephen. Once he reviews the images from the echo he will clear me for surgery, but he made it evident that he would like me to follow up with the cardiologist in Waco and have more studies done. He told me that it was very unusual for a twenty-one year old to have had atrial fibrillation. When I was sixteen I went to the emergency room for tachycardia with no cause. I have had other episodes of tachycardia, especially when I am going through a MCAD (mast cell activation disorder) spell and at other random times. My EKG looked normal and I will get the results from my echo next week. The technician that was conducting my echocardiogram asked me “You don’t happen to have Arnold-Chiari Malformation Type I, do you?” I told her that I did and she began to tell me about her struggle with her low-lying cerebellar tonsils and all the pain she has endured over the past eight years. She had visited several doctors who have not been able to help, but just kept giving her the same nonsense of muscle spasms, psychological issues, etc. The story was identical to mine, but I couldn’t possible imagine dealing with this for eight years. She told me that her niece, also named Cassandra coincidentally, had just been diagnosed with the malformation and already had a surgery schedule with minimal symptoms. She said that it was meant to be that we met and that I gave her hope that she could get help. I told her how awesome Dr. Parrish had been in helping me and that I think he would be able to help her too. We went back and forth talking about our symptoms and how it has affected our lives. I, of course, felt like a total rookie only having had really suffering for six months. Thinking back to my childhood and growing up I am starting to think that some things are adding up. I have theories, but would love to consult with a geneticist about EDS and POTS. I feel like people who have these disorders have to be committed to finding help and not giving up because it would have been so easy to. My father and I took it upon ourselves to research surgeons, symptoms, and this disorder. I couldn’t have done it without everybody’s support. I am so grateful for my family, friends, and supporters.
In addition to all of the school and health stress, I got some horrible news on Monday night. My beautiful grandmother passed away on November 23th, 2015. Dolores Mae Furin Head (January 14, 1937 – November 23, 2014) was a wonderful mother to my Uncle David, Aunt Cindy, and my dad Dale. She was 78 years old and one of my biggest supporters. I remember my grandma as a sweet, thoughtful, lovable lady; She was most opinionated and not afraid to tell you what she thought. She worked so hard to give my dad, uncle, and aunt a good life, doubling up on jobs (waitress as Luigi’s and retail salesperson at Kmart) to make sure there was always enough. Although she divorced my grandpa, she still took care of him until he past away in 2008. She had remarried a few times and was a stepmother to two other children and was just as loving and sweet towards them as her own. Some of my favorite memories include visiting Hawaii together with my immediate family and visiting her house for Thanksgiving. My grandmother was such a great cook and so crafty. She loved to sew and collect Shirley Temple dolls, which she passed down to me. My grandma was lively person and her smile was contagious. I am beyond lucky to have had her in my life. She loved wine! I, personally, am not a big fan of drinking, too much, but my grandmother made sure my glass was always full even if I didn’t want it. It made me laugh because I would try to get my dad to drink it before she discovered I wasn’t drinking much. My grandma visited us in Waco and we played balderdash together with the family. My grandma kept sticking her little discarded answers in my mom’s hair, little did she know my dad was doing the same exact thing to her. Both my mother and she laughed so hard thinking that only the other one had paper in their hair! The rest of us all died laughing when they both realized their hair served as a trash bin and they, too, both cracked up. My grandma loved to entertain and host and she was an expert at it. She always put her family first and made the six hour plus trip to Waco to see me cross the stage as I graduated from high school. She loved antiques so much and had the cutest little setup of vintage items. She even managed her own store, The Cedar Chest, and worked at an antique mall. She fought against peritoneal cancer for over four years and continued to work and care for others the entire time until up to the last two months or so. She was more concerned about me, than herself, when I visited saying she was so sorry for the pain I had to endure, when I felt the same way towards her. Although I am sad that I didn’t get to spend as much time with her as my other cousins who live and grew up close by, I made sure that she knew that I loved her so very much and I know she loved me back. I grew closer with my family through this path. As hard as it is to know my grandma is no longer here, I know she is looking down from heaven and laughing and catching up with my cousin, Austin. I can see her looking in amazement at Austin’s tall stature and how handsome he looks. She would probably comment on how skinny he had gotten and start cooking right away! My sweet grandma, you have fought so hard and held on in order to say goodbye to everyone in the family, and now you are free; free from the constant pain and worry. You are finally at peace in heaven with God and your grandson and I know that you are relieved not to suffer any longer. I know that you will be with me every step of the way and watching me during my struggles ahead. I love you Granny Dee and I’m saddened you won’t be able to meet my children, but I will raise them in your image. You’re bright blue eyes, dimples, and smile are forever engraved in my head and your sweet spirit lives in my heart.
Must Love Pugs 