Three Days.

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I tried to write this post earlier, but a migraine came on and I had to give up and takIMG_7021.JPGe 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.

Anyways, I feel like a lot has happened since the last time I journaled:

I spent Thanksgiving morning with my boyfriend’s wonderful family and they provided a delicious home cooked meal with lots of vegetarian friendly options: sweet potatoes, mac n’ cheese, corn, rolls, potato salad, casseroles, and the amount of desserts! mmm. The only time my family has Thanksgiving is with my grandma who would cook all day and the day before making a variety of dishes, so I won’t lie, it was hard. I was happy to be around loved ones, but felt a since of great loss. I felt the sting of emptiness and pain as I remembered my grandma’s wonderful foods and her working so hard to make everyone else happy, just as Zach’s grandma did. It was bittersweet. As soon as we finished eating and searching for black Friday deals, we were off to Midland for my grandma’s visitation and funeral.

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I knew it was going to be hard. My entire dad’s family was in attendance for her funeral and she had a beautiful ceremony. I was in charge of getting the music together and I wouldn’t want anything to go wrong. I made sure that everything was perfect for the technician. I was surrounded by my aunts and uncles, cousins12295526_1518058948520350_3981899939229491289_n, 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.

They found two tumors on my spine: benign hemangioma(s) on my T7 and T9. My doctor called me on Wednesday to let me know that he wasn’t going to operate on them because he didn’t see that they would cause an issue. What bothers me is the increasing numbness and pain I have felt in my lower back and legs. My neurosurgeon seems to think that the Chiari is causing these issues, so I trust his judgement and am proceeding forward with the decompression surgery without the tumor removals. I will be evaluated a few months after surgery to see if any problems persist. I’m praying these tumors won’t cause me any problems and that all my issues are stemming from the Arnold-Chiari itself.

I decided to take an incomplete on chemistry and pick up where I left off next semester. My teacher said he is willing to work with me and help me anyway he can so that I do’t have to retake the class and can literally pick up right where I stopped. This is all assuming I feel well enough to attend school for the spring semester. I was luckily able to finish my other classes successfully (and I believe well): microbiology, ecology, anatomy and physiology (online) and personal fitness and wellness (online). I can’t explain enough how extremely hard this semester was for me. I am impressed that I prevailed and pushed myself through. With the support of my family, friends, and boyfriend, who provided me with love, encouragement, and transportation, I was able to make it. If I didn’t have them I would have dropped all my classes and swallowed myself in self-misery. I now only have one more final to take online and finish tomorrow.

I also got an undercut in preparation for the surgery this past Friday. My wonderful hair stylist, that I’ve been going to for over a year now, graciously donated her skills to provide me with a shave that wouldn’t turn out totally butchered (As I have sIMG_7022een 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}]!)

I’m winding the days down now until my surgery. It’s this upcoming Wednesday.  Three days left. I am finally beginning to feel the jitters. I becoming nervous and scared. I have thoughts: maybe I should just forget about it and cancel my surgery, I would live, but be in misery. I picture a life full of pain and then say, no that would be ridiculous because I am in so much pain that it can only get better. I think about death. As much as I try to avoid it, the thought always comes back. I’m still dealing with the loss of my grandmother, which makes thinking of this even harder. I can’t imagine what would have happened if she passed away during my hospital stay. I wouldn’t have been able to go to her funeral or make peace (if you can call it “peace”). I still ache knowing I won’t see her on earth again. I know she wanted to go and be with God and didn’t want to suffer, but it still is hard.

Today was a decent day. Despite from suffering with nightmare and night sweats, I slept until about 10 am. I got my toenail and fingernails painted, purple and sparkly for Chiari, took a nap, and even got the strength to get up and go see Krampus with my mom, boyfriend, and boyfriend’s brother. This was the first movie I had seen since The Martian and was worried because I was in a lot of pain for that movie, but today I managed it quite well and only started getting pain jolts towards the last twenty minutes or so. I would say a good day.

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I ultimately want everyone to know how much I love them and how I much I  appreciate all the wonderful things that have been done for me. Never lose faith and keep pushing forward.

xoxo,

Cass.

Hemangiomas.

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I had a MRI on Sunday as ordered by my neurosurgeon, Dr. Parrish and they found two tumors on my thoracic spine (T7 and T9). These are cavernous hemangioma, benign collection of blood vessels, that are pressing against my spinal cord.A cavernoma is a blood filled raspberry. As it bleeds it causes damage to various parts of the nerves. When they bleed they reattach and get bigger. If it is inside the cord it does permanent damage as it damages the spinal cord.

Hemangioma occurs most often in the thoracic spine. These Tumours affect adults and are known to be progressive vascular masses that can cause vertebral collapse and paraparesis (slight paralysis).              -back.com

Treatment depends on the severity. I have had extreme lower back pain, numbness, and tingling. With this being said, I do not knoHemangiomaw 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 need help now more than ever. Please share my gofundme (gofundme.com/cassandrabordner) | if you have the ability to donate it would mean the world to me.

Lost.

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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.

Cass8 Comments

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.

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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.

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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.

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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.

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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

 

 

 

 

Recovering

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Emptiness 

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I know they say bad things happen in sets of three, but I’m convinced it’s more like ten. I’ve been extremely disappointed time after time and I can’t help but feel that things won’t improve.

So to recap my extremely difficult past six months:

I have Chiari and the pain and symptoms are life altering and draining; it’s completely change my personality for the time being and I’m no longer able to do things I enjoy and be the fun and goofy person I am;

I lost my means of income and my boyfriend was fired back in June;

my sweet, beautiful grandma Dee was put in to hospice along with her husband, my grandpa George. My father’s mom has fought hard against peritoneal cancer for four and a half years and she is no longer winning. She has been so strong and has spoiled me with love from the day I was born. I am lucky to have her in my life and ti is so hard to see her in agony. Despite her ongoing battle she still is more worried about me! She’s such a beautiful soul and so sassy and determined, but I don’t want her to suffer anymore. I want what if best for her and if that is for her to become an angel and be reunited with my cousin, Austin, then I will have to accept it. I love my grandma so much and she has worked her butt off her entire life to make sure her loved ones had a good life. I’ve never met such a selfless person. Her husband, my step grandfather, George is also in hospice care. He suffered from a stroke about two years ago and is not able to care for himself. I’m relieved that my grandma has help for her and him both because she was his caretaker ever since;

My papa (mom’s dad) is also having problems with an infection on his elbow that spread to his bone. He will have to see an orthopedic surgeon to evaluate his wound;

I found out yesterday that I will be unable to graduate in August because my advisor screwed up and said that a class I needed would be available in Summer when it is not, also she claims that she thought we were planning for December all along. I had worked my butt off three years straight with no breaks to graduate this summer and although it’s only 4 months later it is defeating.

In addition to this I found out that my school may not be covered this time by the Hazlewood (military pays for schooling of veterans and their dependents) because I’m out of hours, meaning I will have to rely on scholarships or pay out of pocket.

In addition to these earlier in the year my boyfriend’s family had a tragedy and I was bullied out of my job of two years.

I spent two hours sobbing my eyes out to my boyfriend and questioning my will. I know that I am lucky to have the support system I do, but I question why bad luck is constantly around me.

-Cass

Hopeless

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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.

Chronic Pain Must Haves

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I finally managed to finish my “Chronic Pain Must-Haves” after working on it for a solid week and testing out some of the recommended products. Here we have it; I narrowed down what I personally think is a must when enduring chronic pain. I realize I’m “new” to the area, but with three months of serious pain, I feel like an expert already, although I know others have suffered through several more. I hope that my list helps both those who have just started experiencing chronic pain and those who have had it for years. Without further ado, lets get down to the necessities.

Neff-Daily-Purple-Beanie-_1694961. Daily Sparkle Beanie – Neff – $18 –neffheadwear.com. What’s better than a soft beanie to warm your head on a bad hair day? (Check out the ones from Burton: super soft!)

41Sbma7L6vL._SY355_2. Aromatherapy Body Lotion and Massage Oil – Bath & Body Works – $13 ; $16 – bathandbodyworks.com. I have had terrible insomnia for a couple of months now. I had to try aromatherapy after I heard it works for some: I absolutely adore it. My boyfriend is kind enough to give me nightly massages with this oil and yes, it is quite incredible. The scent Lavender Chamomile is perfect to create a relaxing feeling. Now do they put me right to sleep? Not quite like Ambien, but definitely helps set the tone for the night.

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3. Blue Jean 11oz Muse Facet Jar Candle – Capri Blue – $32 – gypsy05.com or Amazon. I realize this candle is quite expensive in comparison to what most people usually pay for a candle, but I love this scent. My mother got this as a gift and I ended up snagging it and loving the scent. It’s a mix of citrus, white musk, and patchouli and it lasts for a good while!

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4. Awareness Case – Inspired Cases – $15 – inspiredcases.com. If you are suffering from a disorder or illness, inspired cases is sure to have an awareness/support case. I love mine because not only does it support Chiari Malformation awareness, it also fits well and has textured print. A portion of the proceeds goes to a select cause! They have cases for iPhone 4/4s, iPhone 5/52, iPhone 5C, iPhone 6/6s, iPhone 6/6s+, Samsung III, Samsung 4, Samsung 5, iPad mini, iPad air, Note II, Note 3, and Note 4!

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5. Huggie Bear Heating Pad – Bitten – $22 – amazon.com. This awesome little pal not only serves as a lovable friend, but also a heating pad for when you need some heat therapy on sore muscles. Herbal lavender and buckwheat scented and comes in brown or tan. I use a regular heating pad and a fan heating pad for my neck, but I have my eye on this one.

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6. HRH Nail Lacquer – Butter London – $15 – butterlondon.com. Any nail polish will do really, but painting your nails to support your illness is wonderful. I like Butter London, but the price isn’t desirable. I would try Sinful Colors available at Walmart and Walgreens.

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7. Lush goodies – Lush – $14.95 – $259.95 – lushusa.com. I love lush products, especially the adorable wrapped gifts. Although I rarely buy products from Lush, and if I do it’s usually for a special occasion, all of it smells amazing and are to die for.

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8. Dammit Doll – DammitDolls – $15.95 – dammitdolls.com. Now, I haven’t actually gotten my hands on this little guy, I’ve heard they are super awesome when it comes to releasing anger and stress. The dolls patterns are limited edition and they come with a sewed in patch that reads: Whenever things don’t go so well, and you want to hit the wall and yell, here’s a little dammit doll, that you can’t do without. Just grasp it firmly by the legs and find a place to slam it. And as you whack the stuffing out yell “Dammit! Dammit! Dammit!” Perfectly said.

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9. 3-Piece SkinCare Kit – Devonne by Demi – $39.95 + S&H – devonnebydemi.com. I really have enjoyed the Devonne by Demi skin care products. They smell amazing and work well. I don’t however see myself ordering every month, so I went with the 1-time shipment and have to say, I’m a fan. I even got a little candle with my purchase that smells delightful. The Devonne by Demi set is to “bridge the gap between the pimple years and the wrinkle years.” It comes with a deep facial cleanser that is coconut-based, a hydrating radiance mist that is loaded with antioxidants, and a 3-in-1 moisturizing primer that absorbs excess oil and minimizes pore appearance. The whole set is a wonderful skincare routine with great results.

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10. Fight Like A Girl Signature Unisex T-Shirt – Fight Like A Girl Official Gear – $19.99 – fightlikeagirlclub.com. These shirts let you show off your support in several different colors. They even have a tie-dye colored shirt, if you just want a shirt to support every cause! I bought a purple one, a size up for a comfort feeling. They also have other wonderful designs.

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11. Netflix – Netflix – $7.99 – $11.99 a month – netflix.com. Okay I watch a ton of netflix, I’m a certified marathoner. My boyfriend and I don’t even have cable because we really don’t need it with the selection netflix has. There are up and downs to it, but I have been a user for six years now and don’t plan on quitting anytime soon. They have a first month free promotion on now. Choose to watch Grey’s Anatomy, Sons of Anarchy and special netflix series like Orange is the New Black, The Killing, and The United States of Tara. They have three different options basic, standard, and premium.

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12. I am Brave Shield Necklace – Dogeared – $48.00 – dogeared.com. I love Dogeared’s necklaces; they are so dainty and have wonderful messages on it. “Strength is always in style…” This “make a wish” necklace is a reminder that you are strong enough to get through this struggle- God wouldn’t give you anything you couldn’t handle. They also have this style in gold and available on black silk instead of sterling silver or gold chain.

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13. Striped Shopping Cart – Typhoon – $29.99 – $49.99 – containerstore.com. I’ve started having difficulty with my backpack. As much as I adore my Burton pack, it’s too painful and heavy right now for my weak muscles. I recently ordered one of these shopping trolleys to use as a rolling backpack. These shopping carts are quite common in the UK, I can see why! There is an umbrella pocket, two side pockets, and an additional exterior pocket. It holds up to 40 pounds and is removable from the frame. It folds up for compact storage as well. Get it soon because the striped one is on sale currently!

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14. Snoogle Original Total Body Pillow – Leachco – $59.95 – amazon.com. I can’t go on enough about how much I love this pillow. It is like several pillow in one and supports my aching back and neck. The cover is machine washable and replaceable. There are several different ways to use the Snoogle too, making it the perfect all-in-one pillow. This has become my most favorite item by far and has kept me from sleeping on my back and providing the support I need to get some rest!

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15. Black Sheep Sleep Mask – Pompon Designs – $18 – etsy.com. Sleep masks are awesome for spoonies. Although it’s hard to get used to at first, the sleep masks definitely help with keeping out light for daytime naps. This one just happened to be cute!

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16. Mermaids Tee & Legging Pajama Set – ASOS – $43  – asos.com. I was saddened to see that this set is out of stock today. Comfy pajamas are obviously a must and ASOS has some really cute options to choose from. Most of my comfy pjs are from Victoria Secret, so make sure to check out their selection as well. Stay away from satin and fleece as they usually are uncomfortable fabrics that don’t allow for breathing.

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17. Amira Faux Fur Slipper – MUK LUKS – urbanoutfitters.com or amazon. I got a pair of these slippers for my birthday last and year and I practically live in them. They run about fifty, but are worth it because they are so comfortable and keep your toes nice and warm!

That completes my must-haves! In summary these products help me make it through the day. I also wear a hoodie-footie (adult onesie) from pajama grams when I’m not in a blanket mood. Start shopping now! There are some good deals that are in right now and the prices will go back up shortly, don’t miss out!

In other news I have an appointment this upcoming Monday with the specialist neurosurgeon, Dr. Parrish. After a horrible experience last Monday where I was told multiple times that I have a referral to psychiatry put in (completely unrelated to my main visiting reason: filling out SDS paperwork, DMV Disability Paperwork, obtaining an Ambien prescription, and Pain Management- all for Chiari). Although she filled my paperwork out, I could tell she was not on board with the Chiari diagnosis. She said that the symptoms are most likely due to migraines (blue hands? Aphasia? Memory loss? Hand tremors? Loss of balance? Extreme neck and back pain? Insomnia? All from migraines, eh?) and that I should stop my birth control because it could be the cause (over 4 years taking with no problems before).Then she said that I had normal flow of CSF (b/c ventricles) and that I don’t need anymore pain medicine (she seemed to be astonished I got the prescription in the first place). I picked up my MRI report later that day which clearly states that there is visible blockage in the major intracranial vessels with a 6mm herniation of the cerebellar tonsils. But it is all in my head… Technically it is, but that’s beside the point. I decided I will no longer be seeing my primary of six years if she is not willing to believe me and that she can’t even read a MRI report correctly. Anyways, got my paperwork filled out, which was my main intention and I got my sleeping pills because I have not been able to sleep hardly whatsoever. I am anxious to see the Dr. on Monday and get his expertise on my malformation. I’m sure we will schedule a surgery date (planning for right after finals) and get the ball rolling to get me better.

Xo,

Cass

Another Week

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Another week down means I’m all that closer to getting relief. This week wasn’t the greatest either, though nothing like last week’s pure agony. I made it through this week of school although I missed two class periods due to my intense pain and unforgiving insomnia. This week I bought a snoogle “pregnancy” pillow in hopes it would relieve some of my pain and help me sleep sounder and to my luck, it does. In fact, I love it. I believe it’s my new favorite. I lay with it in bed, on the couch, and bring it on car rides. It provides the perfect amount of support for my back, neck, and legs. Which is why I decided I would make a post of “Chronic Pain Must Haves.” I’m hoping some of the things I’ve discovered will work for them too. I also received a cervical collar to help with my neck when I’m not laying in my snoogle. It’s perfect and helps relieve the pain of compression on my neck. This was one of my issues why I was having difficulty staying in class. Gravity would get the best of me and I needed to lay my head on the desk. I’m praying this will really benefit me, come Monday.


After finding out a Chiari Specialist that was recommended didn’t take our insurance, I was a little depressed. It’s important to me to find a Chiari Malformation expert due to my associated problems and the lack of knowledge of this defect. However, my dad was able to track down another specialist in Houston (~3 hours away) that has done “hundreds of these procedures.” After calling for some information, we discovered he does take our insurance! I have a doctor appointment on Monday with my primary with hopes to get a referral to him along with a new rx for pain medication and a few disability applications I need done for my school (TTU is working with me to forgive some of my missed deadlines due to my condition- I never missed a deadline before I had this). I’m praying that this neurosurgeon knows his stuff and I’d also like to see a geneticist because there are several side conditions that I speculate I have including EDS, POTS, and MCAS. I’m praying that after the surgery these associated symptoms will be reduced or limited.

One thing I am excited about deciding is getting my hair done before my surgery. I was really worried that the neurosurgeon would butcher my hair as vain as that sounds. I had a pixie cut my junior year of high school and absolutely hated it. I wore hats practically everyday to hide it and cried at my insecurity. So I texted my hair dresser about my concerns and I found some undercut hair cuts that make me feel a lot better about having to have the back of my head shaved.


Today officially marks the end of my BonfireFunds fundraiser! I’m pretty happy about the amount of shirts sold. It means so much that people care enough about me to support my condition. Can’t wait to see all the amazing people wearing their purple. I can’t express how grateful I am for the amount of love I’ve been shown.
Look for my upcoming post!

Much Love,

Cassandra

Whittled Down.

CassLeave a comment

This week has been one of the absolute worst weeks ever. First being told that my condition is “just a congenital birth defect and I do not suspect will warrant any further treatment.” I have been in nonstop neck and back pain continuously. I’ve fallen and skinned my knee because of my balance issues. My memory is worsening causing me arguments with my boyfriend over stuff I’ve forgotten because I’m also very stubborn and used to having a great memory.I found out that my Papa, my mom’s dad, had a really bad infection in his elbow and had to go to the ER multiple times.

Then I was let go at work because if I were to get bitten, scratched, or catch a zoonotic disease it could delay my surgery or worse. I have been forgetting to do certain things and the pain of being on my feet all the time, cleaning, and trying to restrain pets at work was wearing at me. The animals, however, gave me much joy and happiness so I am extremely saddened. Also, I have no source of income at this point. My boyfriend is already on unemployment, so we aren’t in the best position at this point, but he assures me we will be just fine and I shouldn’t worry.

The following day my boyfriend’s car broke down with me in the backseat after we had just bought groceries. I got nauseous and threw up in the parking lot we were stuck in. We had to have it towed and get a shuttle ride because everyone who could’ve given us a ride was out of town. 

That night I had to leave class early because I was in so severe pain that I began to cry. I went straight to my moms house and laid on the ground bawling. I decided then I needed some painkillers and would get an appointment the next day instead of waiting up at the ER. I took my muscle relaxer and old pain killers from my surgery back in 2013 praying for relief.

I then found out that same night some devastating family news that crushed me. I began doubting my self. My thoughts began to stray and I fought hard to stay positive. Insomnia was horrible practically every night.

The next morning I went to school took a muscle relaxer because of the pain and had to call my boyfriend and mom to pick me up and drive my car back home because the meds did not wear off as soon as thought they would. I called my neurologist despite her earlier judgement and left a message telling her I needed pain medicine because of sever neck and back pain. I had a psychology appointment and cried my story to my psychologist who I’ve been seeing for four years and love. She assured me I was going to be ok. My neurologist called me back mid appointment to tell me she doesn’t prescribe pain medication and I have to see my primary. I thought this was a bit ridiculous because this was a side effect of the malformation of my cerebellar tonsils. My psychologist told me she was so proud of me for standing up for myself because she knows how hard it is me to fight back. 

So I called my primary’s office to find she was on vacation but I could see a nurse practitioner instead. I asked if they could prescribe pain meds and was told they can consult with a doctor and could. 

After another restless night I went to my appointment this morning. I was told that I should see a psychiatrist, which I do believe to be true, but is not my primary issue at the moment. She told me to keep taking muscle relaxer. I cried and told her I can’t sleep, I’ve been in constant pain. She said she would consult with a doctor but could give a shot of toradol which helps for 6 to 8 hours. Frustrated I left. I told my dad who took the liberty of calling the office mangers of my neurologist and the nurse practitioner and basically telling them it was unacceptable for me to be in chronic pain and have to wait because my primary is out of town. My neurologist decided not to prescribe after being told she would be reported to the board and my insurance company because she took me on as a patient and didn’t even follow up with me on my MRI findings. So she is no longer my neurologist. I officially fired her. The office manager of the nurse practitioner’s location was much more helpful and got a pain script put in for me right away. 

This whole day I had intended traveling out of town to Livingston to visit with my dad. It has been awhile and I miss him. Last time I went down was before school started. We were hoping to leave right after my appointment thinking we would leave with a pain prescription. 

So around 3 I go to HEB pharmacy: the rx is marked urgent and the technician assures me that it’ll be 30 minutes. So I ask him to call me as soon as it is ready. At this point my boyfriend and I are extremely frustrated. We head to get food and decide to wait to leave until I finish my homework and get a call from HEB. I finish my homework right before 5 and call HEB pharmacy as we drive up to pick up my prescription. At this point I’m in pain. My neck begins aching. I’m told it hasn’t been filled yet I tell the lady I had come by at 3 and told it would be filled in thirty minutes. The lady apologized and told me she would get someone to check me out so I didn’t have to wait in line again. While I’m standing at the side a red headed older lady tells me I have to get back in line which is ridiculous. She says she has been here all day and that she hasn’t had an urgent script (basically calling me a liar), I tell her that it is unbelievable that I had to wait in line when I was told it would be filled at 3:30 and ask to talk to the manager. Of course he’s not in. I’m in horrible pain at this point. I wait in line fuming. Ten minutes later when I get to the front with the cashier, she can’t find the prescription anywhere. She looks in the filing cabinet and multiple trays and consults three different individuals. The crew are all looking over at me because the red head lady is whispering to them and I’m beginning to tear up from stress and pain. The pharmacy technician finally finds it because the girl I was on the phone with put it aside to be checked out early. (So I didn’t have to wait in line) I talk to the pharmacist who was very professional and kind and tells me she is so sorry and that it was completely their faults. She states that next time I should ask to see a pharmacist and not have to wait in line when the medicine was marked urgent and I was in extreme pain. I’m just crying my eyes out and my boyfriend walked me to the car and helped me calm down. Now we are finally on our way to see my dad after a day of hell. We will be arriving almost 12 hours later than we had originally planned to. I have my pain medication that took leaps and bounds to get and I’m exhausted mentally, emotionally, and, of course, physically. I have not strength left to fight against anyone. I pray that God give me the strength to continue on. The things I am thankful for this week: 21 shirts being sold to wonderful individuals. I didn’t think that many people cared about me. I found another lady in central Texas through a mutual friend who is an expert in chiari malformation and is in the hospital fight now for a third brain surgery. She has had so many more complications than I have including hydrocephalus, syringomyelia, and a cyst blocking the flow of her CSF, but I can finally talk to someone who knows first hand what it is like. I can ask her questions about the surgery and it gives me peace and reassurance to talk. My dad’s perseverance to make sure I’m taken care of when I don’t have the strength to do it myself. My mom and my boyfriend taking care of my fragile broken state. My best friend for talking me out of a crappy mood and being there for me. Finally, the end of this week I am thankful for.

End of vent.

 

 
-Cass, chiari fighter, bullying survivor, and surviving life’s tornado.