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

Grateful.

I’ve never experienced so many ups and downs within the span of only a couple of weeks. After my little pity party post, I decided to really try to focus on the positives in life. I joined the movement 99 Days of Freedom, whose mission is to see how Facebook users life are impacted by quitting for 99 days.

In response to Facebook’s controversial mood experiment involving some 700,000 unwitting users, we launched an experiment of our own, determining how life without Facebook impacts user happiness

I surprisingly haven’t missed it yet. The only thing I miss is chatting with my boyfriend via Facebook messenger, but in all honesty we have phones for that and I should be focusing in school anyways. People constantly try to compare themselves to others and I am 100% guilty of this! You can’t compare your life to another person’s because we are all so unique and it is completely absurd to discount your “joys,” to compare them to a celebrity/friend/etc.’s success and oh so happy life. Life is like houses: they may be pretty from the outside with their freshly mowed lawns and little white picket fences, but on the inside the house could be a train wreck and no would ever know unless they entered. I’ve decided to keep track of three different things (or more!) each day that I am grateful for. For example today’s entry:

11.17.2015 – Today I am grateful for:

  1. my boyfriend’s support through my Chiari journey; today my boyfriend drove me to class and waited through it to take me home. He willingly paid for our groceries with no hesitation, although I will pay him half back. He says “I love you” at the most perfect time when my self doubt grows increasingly strong.
  2. my mama; my mother has been nothing but a godsend through this all. I do not have a child so I do not know the true connection a mother feels with her child, but I can tell you that my mom would go to the end of the Earth for me and I her, too. I truly could not have gotten through this all without the love and support of my family, friends, and my amour.
  3. my therapist’s guidance; I’ve always had a tricky time finding the right person to talk to about my hard times, but I finally did back in 2012 with Dr. Hightower. I feel completely at ease to spill my thoughts and finally let out my worries. I try to be strong for everyone around me and for myself, so having moments to release this and get advice on how you can make things better, absolutely is a necessity.

I got the idea to think or write down these grateful moments from time.com and their guide to be happier. I’ve had so many lows in my life, but it does make me appreciate the highs I do get to experience and it makes me really think about consequences before my actions.

b133cd5a08d3c7e6f93d494d60063b9c

So starting with two weekends ago on November 8th, I traveled to Austin, TX with my mom, dad, and boyfriend for my brother and s-i-l’s baby shower. My second niece is due on January 17th, 2016! Although I am not too entirely close with my brother and his family, it was nice to be able to catch up a little in the hustle and bustle of the hive. My niece, Emelia, is almost three (on January 10th) and is such a sweet, kind and caring little girl with a big heart. I love that child with my whole heart and it makes me so happy to have her in my arms. I can’t wait to be a mother one day, after I can put most of this behind me (surgery, school stressors, family stressors, etc.). I have always been nurturer and my desire to have my own child has always been there. Seeing Zach hold Eme and play with her makes me feel ecstatic; one thing that has helped me through each day is seeing how our relationship has gotten closer. We talk about our future plans all the time and I pray that we will be happy together and make things work through thick and thin. We were put in each other’s paths for a reason and I know being with Zach has changed me fore the better. I’ve grown more confident in myself and with my self image (learning to love my flaws), to let the little things go, and to relax because life happens: there is no sense in getting devastated over an event you cannot change, no matter how hard you try (yet I still do at times and Zach helps me through my dark days). I love our relationship: our netflix marathons, salted baths, call of duty nights, diet coke obsession, neopets, star wars collection, dvd/blu ray hoarding, sci-fi-horror movie nights, road trips with plenty of snacks, walks in the sunset, mini day hikes, fall out 4 game sessions and cuddles. We understand each other’s nerdiness and fully appreciate it.

twincollage20151117223109

This past weekend we traveled all the way to Midland and back to see my grandma, who is nearing her final days. I can’t thank my mom and boyfriend enough for driving me out to the middle-of-nowhere-west-Texas. It means so much to me to be able to see my grandma and be able to  express my sincere love and gratitude for this woman that has given so much to my dad, uncle, aunt, and to me. I have never seen such a strong, independent woman. She’s tough as nails, but cancer was the only thing that could stop her. I can’t begin to explain all the sacrifices she has made to give her children a good life and in turn my brother and I through our dad. I was so happy to be around her and see her smile and bring joy to those around her. I am praying I will be able to see her again this upcoming holiday and that she can hold on to meet her great-granddaughter. Despite the circumstances, I enjoyed the trip. On Friday night we ate thai food on all white sheets in the hotel room watching Inside Out (which, if you haven’t seen it, you MUST! I think it is easily one of my very favorites and teaches such an important lesson why we need all of our many emotions to be happy – coincidentally perfect for my life). It was nice seeing my aunt and uncle and being able to be amongst family even though the hard times.

11326458_708835222594876_1819387460_n

While spending the evening at my grandmother’s house I watched the horror unravel the Paris attacks on the news. I am utterly speechless at the heinous murders that took the lives of 129 people in a place loved by so many. I cannot understand the capacity of hatred an individual has to have to do something like that, there is no way they are human, just cold terrorist monsters. I began checking instagram to see who was at the Le Bataclan during the mass shooting and bombings and began praying for those people. One picture stood out to me immediately: a young couple that looked to be in their early thirties enjoying the perks of being young and alive- Gilles Leclerc and Marianne Labanane, I later found out to be. The young gentleman with a prominent mustache and his girlfriend thought they would be enjoying an Eagles of Death Metal concert and having a great time. I begin to pray for them, for all the victims and their loved ones. I later found out on Sunday that Gilles had been one of the victims, but his girlfriend Marianne was alive, but in shock. I didn’t know these people at all, but I felt a connection to them; perhaps because I, too, am young and have gone to concerts and can empathize. Something in my heart pulled as I was hoping that these two would be safe and reunited. I’m saddened deeply by the tragedy that took place at Le Bataclan and across Paris that took the lives of so many. I can only hope that it gives the wounded and the victim’s family and friends comfort knowing how much an impact they had on the rest of the world, uniting many nations together.

After the rollercoaster of a Friday, we traveled home for only one night. I sleep best at home, so I was happy to be back in my bed after more than twelve hours of traveling to and back and two nights on a stiff mattress in a motel. One night to take a hot bath and enjoy the comforts of home. The next morning we set out for Houston, where my appointment with the neurosurgeon, a Chiari specialist, resided. On the way down I slept through the entire car ride thanks to my muscle relaxer. That was a special treat for me, as I hadn’t slept well for the past several nights! After meeting my aunt and uncle for some Mexican food and getting lost in downtown Houston, we finally made it to the hotel and settled in for the night. My boyfriend and I went down the the hot tub and enjoyed the immense heat of the spa- we have always wanted one and really love soaking. Afterwards we watched The 100 and the Seattle Seahawks vs. Arizona Cardinals game where we were disappointed by a close loss. That night was miserable. I had a nonstop migraine that consumed every sinus cavity of my head. I woke up around four am, trying to get any type of relief. I started a hot bath and put a cold towel over my eyes like suggested by a chronic migraine sufferer, but to no relief. I could not get back to sleep, so I patiently waited and suffered until seven am to get ready for the day.

BRAIN-no-hangtag_1024x1024

The time had finally come to see the specialist. After we waited for a good bit, I met Dr. Rob Parrish, a retired Army Colonel and Board Certified Neurosurgeon with specialties in Microvascular Decompression for Trigeminal Neuralgia and Hemi-Facial Spasm and, most importantly for me, Chiari Decompression. Within only a few minutes, Dr. Parrish confirmed I had Arnold-Chiari Malformation Type I with a simple temperature sensitivity test to my hands and feet (which were surprisingly worse than I previously had thought) and a few questions about my migraine headaches. He told me I would be a good candidate for surgery and that my symptoms should improve, but he could not give me a definite answer that my pain would subside; one of my biggest problems. I began to cry as I imagined what my life would be like living through pain. My dad reassured me that the surgery would help and that everything would be ok. I set up my decompression surgery for this upcoming December 9th to have a dura patch placed on the back side of my brain from a fascia graft from my leg. I can’t begin to explain the relief to know that a doctor does believe and acknowledges my pain and symptoms. It’s truly a miracle.

I have to be cleared with the cardiologist beforehand to make sure I am in complete sinus rhythm after having to receive a cardioversion last year after going into atrial fibrillation (a.fib). Dr. Parrish is adamant that I see a cardiologist in Houston at the Methodist Hospital he works at. I have been tested before after my first initial attack. I wore a cardio monitor for two months and had no definitive results. I am a bit eager to know what things look like now because I have had episodes of tachycardia probably related to a side condition. The doctor noted that my reflexes were way too entirely active and that I need that looked into as well. A lumbar and thoracic MRI will be done to determine whether I have tethered cord syndrome, another malformation that relates to neurological disorders or some type of spine trauma. Exactly three weeks from now I will be operated on. I am praying for all the success that I can possibly receive from this surgery. A life with no pain.

I know this post is massively long, but I have had so much happen. If I can make it through two more weeks of school work, I’ll be in good shape and ready to go.

Xo,

Cass

 

 

 

 

Hopeless

I’m really starting to lose hope with how much difficulty I have had to face just to get any relief. Last Sunday my mother, boyfriend, and I traveled to Houston, Texas in hopes of meeting a neurosurgeon who specializes in Chiari Malformation. My dad did a lot of research to find Dr. Parrish and was delighted with his history and his military background. My mother took off Monday from work and my best friend volunteered to look after her dogs, while my boyfriend’s brother looked after our pets. We set off on Sunday afternoon and made our way though the rain to my aunt and uncle’s house.  On Friday I learned that my insurance had not yet approved the visit because of the distance we had to travel. My dad called the office to see what could be done and was told that everything would be just fine because my dad offered to pay for the visit out of his pocket.

This has all been so stressful for everyone. We all ate at a wonderful little Mexican Restaurant called Tony’s and they had excellent enchiladas. It was nice visiting with my Aunt Babette and Uncle Daniel and I know how much my mom loves hanging with her sister, so I was happy she was having such a good time after constantly stressing about my situation.

We made our way to the hotel that smelled oddly of feet, but was close to the hospital. Zach and I enjoyed the hot tub while sharing a white chocolate mocha. For a minute we had relaxation and peace as the heat radiated through our bodies.

After a decent night’s sleep it was time for the appointment. My primary’s office decided to call at 7:30am and wake me up to ask me if “my headaches were better after stopping my birth control.” You see, she seems to think that this all is in my head and my birth control, that I have had no problems whatsoever for the past four years, might be causing me headaches, memory loss, aphasia, and my other Chiari symptoms. Obviously I had no intention following those bogus directions because I’m probably not even taking birth control, might be all in my head, ya know? So I told them no. I was hoping they would tell me my referral went through, but to no luck. I checked on it and they again said it was not authorized yet. We’ve never had trouble with our insurance not covering my many visits (through all my side issues with this malformation), so I was finding it odd that it took over a week to authorize it.

While we were getting ready for the appointment, after no luck of getting back to sleep, I got a call from Texas Tech to set up disability services for me. I was relieved at all the different options that were recommended for me to help me be successful despite my disorder. I can have extra time to finish assignments, tests, and to get to class, which will help so much as there are days I can’t get out of bed  because the pain is too severe to function. I now have a little more hope for my school work. I’m so close to being finished that I do not want to put a halt on it. I should graduate this Summer and since I attend TTU through Waco, they do not offer the classes I need every semester, but only once a year usually, so that would put me back a good deal.

After we were all ready we made our way to the Methodist Hospital for my appointment. We didn’t have any breakfast because my mother was too nervous to eat and we were running late on time anyways. We showed up thirty minutes before my appointment, signed in, and I got a stack of paperwork to fill out. As I went to sit down my dad surprised us hiding in the corner of the office. He originally couldn’t make it because he had orientation for his new job and they got me in for this appointment within week, leaving no notice. He luckily had a very understanding teacher who wanted him to be there with me. I was happy to have my dad there because he is a nurse and knows so much medical terminology and would be far more familiar with the “lingo.”

I began filling out a novel of information packets asking me every bit of information about my medical history, what brought me into the office today and so on. My mother and boyfriend headed back to the hotel to grab my wallet I left in the glovebox because my crappy memory and being rushed made me forget what I needed! I spent about thirty minutes scribbling my life history down when I finally finished the packet and turned it in. We waited and waited and waited. Slowly an hour past until finally I heard my name being called. I was excited to finally be able to see the doctor. We got up and walked up to the door when we were met by a lady who told us that they hadn’t received the referral so Dr. Parrish could not see us. My dad immediately started getting frustrated and told her: ma’am, I talked to someone last Friday, who said it was perfectly fine for us to come if I paid out of pocket.” She began questioning his story: “at our office?” “Dr. Parrish’s office?” We found out that the lady that told my dad that we should come was likely on vacation and nobody else admitted to it. The lady kept saying “you should’ve gotten a name,” as if it would have made any difference. After she went and consulted with the staff three times, the ultimate decision was no. We all became emotional and I stormed out, extremely frustrated. My boyfriend calmed me down as I began to get more upset. I truly believe that these things happen to me more than the common person and that I am stricken with bad luck. There is no other explanation.

My parents came down to the lobby after us. I began feeling hopeless and heartbroken. My dad said that the lady began to get emotional because he explained to her that no one was helping his daughter and that he just wanted to do what was right for me. They both took off work, spent money on gas and a hotel, and were willing to spend a lot on the appointment just so I could see the doctor and get some help. It really is hard not to be pessimistic in these situations. I’m tired of being in pain and having doctors not believe me. I’m tired of being physically exhausted and drained. We got into the car and at a much needed lunch at Smashburger. A black bean burger and a peanut butter chocolate milkshake served as the perfect pick-me-up. As we headed home on the three hour drive, I got some wonderful rest from the help of a muscle relaxer and dreaded my upcoming week.

It’s funny how everything turns out like this.

xo,

Cass.