Attack.

I had an extremely unpleasant Saturday night and early Sunday morning as I became awfully ill. It began around 10 pm. My fiancé and I just finished eating and were consuming ourselves in the disturbing, but enticing Black Mirror episodes when I began to have an allergic reaction. My reactions don’t really have a certain substance or food that causes me problems; instead it’s just when my mast cells decide to act up, often with foods I have eaten so many times before and have had no issues whatsoever. Mast Cell Activation Disorder causes my mast cells to react inappropriately including cardiovascular, dermatological, gastrointestinal, neurological, and respiratory problems when attacks occur. I unfortunately have had anaphylaxis to near-anaphylaxis attacks on several occasions and it’s terrifying.

This past Saturday I began feeling flushed and my heart rate began to increase. I went to the bathroom after feeling horrible stomach upset and began having what I call “allergy-related diarrhea.” I know this is probably too much information, but unfortunately that is one of the big symptoms of MCAD: severe diarrhea, intestinal cramping, vomiting, and nausea. I called my husband in to get me my Benadryl: my go-to drug when I begin having reactions. I was covered heavily in hives on my neck, chest, stomach, and back. I quickly took 50mg of antihistamine, but my pulse and heartrate were fast and I began to wheeze a little. I have had bad allergy attacks before and like to avoid using my Epipen unless necessary (as I must go to the emergency room), so I’d rather take 75mg of Benadryl than rush to the ER. I began to calm down and try to slow my breathing. I thought I was doing better. We finally headed upstairs around 12 am and something just didn’t feel right. My heart began to feel pained and heavy. I clutched my chest in pain and then I began to feel extremely sick. My whole body felt numb and felt like it was burning (kind of like how my lidocaine patches make my back feel – numb, but like a slight burning/tingling sensation); I became extremely nauseous and I got tunnel vision. I told my fiancé I need to go to the ER. My heart began feeling like it was going to explode and just sputter out. I became most confused kind of rambling and I told my husband I need an ambulance. I never felt like this before. I was on the verge of passing out and Caleb said my skin was very cold to the touch. I felt so sick and confused. We got up and made our way down stairs as I was mumbling that I had to have my glasses, I needed my glasses repeatedly. When we got down the stairs, Caleb couldn’t find his keys. I sat down on the bench and started taking deep breaths. When my fiancé finally got his keys, I decided I wanted to try to go to bed instead. My heart rate had slowed a little and it was nearly 1 am.

I had never felt like this. The only thing I could relate it to is my atrial fibrillation episode back in 2014- I stood up and became faint with my heart beating uncontrollably fast. I wondered if my heart again went in to a-fib. I emailed my doctor the next day explaining what had happened and he called me immediately that day. He was extremely concerned that my heart had gone into another atrial fibrillation episode. He has put in orders to see another allergist that can do more definitive testing and can hopefully test for reactions to spices. He also put in another order for a heart monitor (my fourth time wearing) to see if I have developed an arrhythmia or am in tachycardia often. Finally, he put in labs for bloodwork just to make sure everything looked okay.

I have known that there has been issues with my heart since sixteen when I went to the hospital for unexplained tachycardia. My meme (maternal grandmother) has a history of chronic tachycardia and she actually ended up having a heart attack recently. My mother also has some heart issues: a murmur and a possible infarction (mild heart attack). I am just praying that I end up making it okay. I want to have a future ahead of me and I would like to have children eventually, so I being healthy (and finding answers) is my number one priority.

Much Love,

Cass

Lost.

I finally have almost reached the end of my fall semester and I won’t lie, this was the hardest semester yet. To be suffering in nonstop pain and constantly worrying about my afflictions has made it most difficult to concentrate on my school work, but I have tried my best given the circumstances. I am in the last leg of the marathon and I’m dying to finish. I have to finish up three more lab reports, study for three chemistry tests (last chapter, make up test, and final), an ecology final, a microbiology final, write a five page paper on my identified microorganism from my unknown experiment, make some sort of demonstration to present said organism, take my anatomy and physiology final, and finish up my post fitness class exam: all this in the span of a ten days. I really am not sure quite how these next days will go, but I am asking for leniency and for support.

12292647_816254541824841_1235431058_nI 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.

ScanIn 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.

“We are afflicted in every way, but not crushed.” – 2 Corinthians 4:8