New Leaf.

Turning over a new leaf is always a difficult task, but one that I have been faced with. After completing almost three months of school, I was devastated to realize I had to withdraw from my classes. Not only was I suffering with severe anxiety (that has gotten worse since my operation) and depression, but my memory is getting even worse. I am having problems recalling times, dates, and with my school work: even the most basic of terms, which has caused a great decline in my grades. After talking to my doctor, he determined I should withdraw because I was basically over doing it and could potentially threaten my recovery. I have now been out of school for a little over a week. While it is comforting, knowing that I don’t have to stress over assignments and tests, although I am still enrolled in my last Spanish class, I am disappointed that I couldn’t keep up with the semester and that I won’t be graduating this year. I have to take back control of my health, so a neuropathologist is in order to get my cognitive function tested. I’m not sure what results will show, but maybe going through some therapy (such as speech therapy, etc.) will aid me in recovering some of prior abilities. In addition to dealing with my “brain issues,” I have to test out several medications in order to help me with my a&d. I have tried so many different ones, that I’m becoming a bit exhausted and hopeless that I will ever find something that works.Screen Shot 2016-01-06 at 9.41.35 PMI have to report some ups amongst my many downs. First and foremost, I have a new addition in my life: Mavis. Mavis (pronounce Mahv-is, not Mae-vis) Odessa is my twelve-week-old Puglet, who is the light of my life. My parents and my boyfriend all went in to gift me my tiny biff for my 23rd birthday. From about the age of six-years-old, I have obsessed over the idea of having a pug. My parents were always against it, so it never became, until now. We first met her on February 6th and then picked her up on March 6th. I am currently training little Mav to be my service dog with the help of Lelah Sullivan’s book and hopefully Service Dog Express (whom I’ve contacted and will hear back within two weeks). She is so full of joy and energy and today she completed her first day of intensive training and did wonderfully. I took her in public and tested her ability to hold her attention on me. This being her first time, cars, birds, and little noises distracted her, but she soon got the hang of keeping focused on me with some great reinforcing clicker training. She’s my little companion and I can’t wait to see what a difference she will make in my life, once she is trained. Another little joyous moment came with a new job. I now work at a doggy daycare center and have enjoyed it thus far, but have decided it is too physical for me to sustain. I didn’t realize the full extent this operation would take on me physically, mentally, and emotionally. I over did it. I can’t keep up with everybody else, which is hard for me to accept. My memory and my strength (physically and emotionally) has degraded. The frustration that comes with this is unbelievable. I know that I am not alone, but yet I feel it most days in terms of my mental/emotional/physical status. I can’t guess when I have flare days, yet I have to push through them with excruciating pain in my neck and back and brain fog that won’t shake, no matter how hard I focus on concentrating. My ability to stay focused has diminished and I am beyond irritated at myself, although I know it is out of my control, that I cannot control it. I have found some support through Chiari Life on facebook that has helped me feel more united, but I still am struggling.

One last thing! I wanted to expand my blog into my other passions: as you might’ve noticed from my last post. I am trying to start loving myself more and more and appreciating the things that I am good at and enjoy. I love fashion, but I hardly have been able to be fashionable because of my condition. Most days I have felt exhausted and not up to dressing up, so now that things are getting better, I want to share my passion as well as my training updates with Mavis, and other bits and pieces of my odd little life. I hope that whoever follows my blog, will continue to, and whoever doesn’t will be drawn to a new diversity.

Much Love,

Cass & Mavis

follow Mav on instagram (@mavisodessa) for updates on growing up.

(images are created/taken by me. Please do not repost without permission)

People Hope

 

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People Hope is an amazing organization, founded by Anna King, that I have had the absolute pleasure of volunteering for. This organization, not only provides hope and light to those who suffer with chronic illnesses and their families, but it also brings us all together as a community with God’s love as we share our stories and moments.

“People Hope is a new nonprofit organization dedicated to being a place of authentic hope for those battling chronic illness, whether diagnosed or undiagnosed.  Our website will provide resources of hope and inspiration, creating a community of support that reflects the loving compassion of God, and encouraging people to define their darkest day as their finest hour.”

I first discovered People Hope after I was diagnosed with Chiari Malformation. I was having an extremely difficult time emotionally, physically, and mentally. I was so utterly defeated by my situation and slowly letting depression and anxiety overwhelm me. I didn’t have much clue about what was going on and I was so fatigued and in pain all day, everyday. If you don’t have a chronic illness, it’s pretty much equivalent to your worst flu day, except everyday, and you never know when you will have a flare up. You can’t make plans that are reliable because that could be your flare day. You try your best, but pain and desperation creep up each time. That’s my experience with how I felt in the beginning. Although, I have found some relief, I continue to have days where I am hopeless: pain, fatigue, and feelings of despair. People Hope has helped me through some of my worst days. I’ve been able to help others in their time of need and in turn, helped myself.

Please if you have the funds or even just want to share this post with your family, friends, and followers, please do. In order to launch this website and help more people, finances are needed and we cannot do this without your help.

Instagram | Facebook | Twitter

xoxo,

Cass

Life as of Now.

As you can tell I went on a bit of a hiatus. Although I wish I could say it was because I was having such a wonderful time, that I forgot to journal about them, but sadly this is not the case. Since December, I’ve spent practically most days in bed; whether it’s playing call of duty or making eBay posts in attempt to make some money (3 months of unemployment can’t be good for anybody), I just haven’t been too well. I have my good days like today, but I have bad days. A lot of bad days, but I’m hoping it’s just apart of the healing process.

I had a wonderful Christmas close to home, but I had to battle being sick through the holidays. My boyfriend and I spent Christmas at our house because on Christmas Eve I went to the doctor’s office with non stop vomiting, stomach cramps, and diarrhea. The doctor assured me it wasn’t a virus and that I was suffering from withdrawals. Thing is, I’m still having these issues often, even now. Although, I nearly passed out at HEB while picking up my prescription to relax my stomach muscles, I made it through and had a wonderful time with Zach’s family and my mom. We were gifted some amazing gifts that really made me feel so thankful for all the wonderful people in my life. We basically had four different ‘Christmases’ or family gatherings: Zach’s immediate family, Zach’s extended family, my mom, and my dad. We went down to Lake Livingston to visit my dad around the 27th. My best friend, Dianne, who my dad calls his “drinking buddy” joined us for a two day visit. It was completely bitterly freezing in Livingston and it messed with my joints and muscles severely. I’ve been using essential oils to try to alleviate some of this and warm baths, but it’s been bad.

Another issue is my heart is acting up. I sincerely believe that I have POTS (post orthostatic tachycardia syndrome) and have had several tachycardia episodes which include hand tremors. It honestly feels like I have adrenaline just running through my body for no apparent reason. I visited the cardiologist, who ordered me to wear a Ziopatch for two weeks (haven’t yet received) to monitor my arrhythmias, just the new accessory need for back to school. Honestly, I’m praying that they will catch it and just diagnose me so I can get to treatment.

I had my one month check up with Dr. Parrish and I am healing so well. I starthritic-glovesill have vertical nystagmus and some memory issues, but I’ve been doing relatively well. My hands and feet however, have not beed doing good. The lack of sensation has definitely worsened in my limbs. I’m probably at 40% of what I should be feeling. I just bought some themoskin gloves today in hopes that it may help with the heat regulating problems. I asked Dr. Parrish about these problems and he says I may be noticing it more now that I’ve had my CSF returned to normal, but I’m still debating this.

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I’ve had ups and downs this year already. My doberman, Max, passed away on January 4th after battling kidney failure. He was almost thirteen and he’s been a wonderful companion. It was definitely hard. Losing a family pet that I’ve grown up with has just been heartbreaking. I feel as if I have lost a brother. I know that he is no longer suffering, but the ache. In good new, Juliana Nova, my second niece was born on January 15th, 2016. She’s so extremely tiny, it’s unreal. I am looking forward to getting to spend some more baby time with her.

On January 14th, I got a memorial tattoo in honor of my grandmother’s birthday. She would have been 79 years old. She taught me to love sewing. She gifted me all of her sewing items and I will be picking up her Singer sewing machine that she has been using since my dad, uncle, and aunt were kids. I got a tattoo of a pincushion in the shape of heart to signify this love we shared together. The wonderful Clamore Wolfmeyer did and excellent job and I, for the first time after getting a tattoo, began tearing up because it meant so much to me; to add a piece of my grandma to my sleeve.

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Today marks exciting news as well, as I had an interview this afternoon for a new job! It’s at an optical surgery center and they are interested in training me to be a surgery technician. I am beyond stoked, although it’s in a separate path from veterinary work. I want to explore my options and put my biology background to good use. I have a follow up interview tomorrow and I cannot wait! My boyfriend also got an interview with a follow up and we will know news by this week.

I begin school this Friday in my last Spring semester (hopefully) at Texas Tech University for my Bachelor in Biology with a Chemistry minor. I am expected to graduate in 2016, December. I cannot wait and beyond thrilled. I have worked so hard to get where I am and am praying that this works for me. I love learning, so I am looking for guidance through this time.

Also, if you live nearby Texas, you should definitely try to stop at Joanna and Chip Gaines’s Market at Silos in Waco. My best friend and I enjoyed an amazing day shopping for rustic decor, eating Pei Wei, and shopping with my gift cards. I bought two galvanized letters, some faux (but amazingly realistic) florals and a fern and a totally awesome Waco shirt (I’m a native so it suits me [from the market]), a Columbia jacket (Belk’s gift card), Kick Ass, In Time, and Limitless (Best Buy gift card). My boyfriend and I also upgraded to a Xbox One for a GameStop trade of a PS4, Xbox 360, plus several games, and a controller or two. We got me and awesome controller that changes colors, Call of Duty and Destiny. It was a great day.

Much love and sorry for the quick post to wrap up the last month

xo,

Cass.

 

Decompressed.

Three and a half days in the hospital, five IV pokes, and an arterial line: I had brain surgery and survived. We headed to Houston on Tuesday, December 8th to give us plenty of time to plan for the bumpy road ahead, staying the night with my Aunt Babette and my Uncle Daniel in Katy, about a 45 minute trip down the road. The day before surgery I could hardly eat. I was so nervous and had absolutely no appetite. I got a call around four pm and was told to be at the hospital bright and early at six in the morning. I knew this would be a hard time for all of us because it meant us leaving around 4 am the morning of and hardly no sleep the night before. I took an ambien the night before in order to drift off to sleep and before I knew it, it was 3:30 am, meaning I had to get up and shower with surgical scrub again and wake my mother up. Once we finally made it to the hospital, the staff made no hesitation in getting me changed into their specialized “Bair Paws” gowns that allows hot or cold air to flow through the gown to keep the patient at a desired temperature. Once I was all dressed and had socks on, the nurse asked if I had used the surgical scrub everywhere. I told her I had not, that I only used it on the back of my head and left thigh. Embarrassment pursued as they made me throw away my gown, change my linen, and rewash with their specialized hot rags. Eventually I got settled down into my new gown and was categorized as a fall risk, so I got new socks and a fancy yellow wrist band. The nurse went over all my information several times to make sure they got every single thing wrong with me: my cell mast activation disorder, tegaderm allergy, my four previous surgeries, etc. etc. etc. I had my IV put in and met with the anesthesiologist. She told me she would monitor me under anesthesia and make sure that all my vitals were fine. She informed me that another IV would be put in while I was under and that I would be given something to relax before they wheeled me back. Amazingly, I was not nervous. I was ready. I met with Doctor Parrish and the operating room nurse before they wheeled me off. I said goodbye to my mom, dad, Aunt Cindy, and boyfriend after they gave me the drugs and took me to the operating room. I arrived to the sacred cold sterile room and the anesthesiologist told me she was going to put me to sleep now. I told her “okay,” and on we proceeded.
I woke up four hours later in the Post Anesthesia Care Unit (PACU) with a smile on my face. I asked nurse Julia, who was awesome at what she does, if I was alive. She laughed and told me that was the first time she had ever heard that one. I couldn’t believe that I made it through and I was awake and feeling relatively great. My mom and my boyfriend were the first to see me with a smile on my face (top left circle) and I told them I loved them and that I was completely alright. Nurse Julia was wonderful and got me about nine different cups of water (thank goodness I had a catheter in) and ice chips as they had no beds in the intensive care unit opened. My dad and Aunt Cindy snuck back in the PACU to see me. My dad previously worked in PACU and as an OR nurse for many, many years, so it felt quite natural to invade any hospital’s “PERSONNEL ONLY” signs and see me, since the lady letting visitors in rudely told my mom that my dad and aunt could not see me. Nurse Julia was able to give me a lot of pain medicines because I began feeling it badly. The shearing pain of my incision in my neck. The cut-muscles, burning. The sting. My leg where my dura patch was taken from began hurting and I was wailing in pain, but content because she was so nice and helping me with my requests. I kept thanking her and telling her she was so nice and that I would leave feedback for her. I got her whole name because I wanted to tell the head people that she was so wonderful. It means so much when people are nice to you, especially when recovering from neurosurgery. I was in the PACU for several hours until a bed opened in ICU and off I went.

My first night there was rough, I started feeling the affects and my tears got the best of me. My throat was on fire and I was told I couldn’t drink any more water (after drinking about 15 cups) because it could mess up my sodium levels (my dad told me this was BS. He said I was young person, not some seventy-year-old). I was not allowed to have as many meds as I did in PACU because apparently that is the “trial” period where they determine which drugs work best for you. The night I arrived I had a young nurse named Brittany helping me and she was teaching a student. I had no idea what the student’s name was, all I knew is she was not well informed about any medications I was on and believe me, trying to explain to the nurse-in-training that you need your prescribed muscle relaxer, but she has no inclination to look in the record at what you’re taking or what you needed, is beyond frustrating. I told her I needed my muscle relaxer about ten times and she began shooting off anti-anxiety meds: klonipin? xanax? NO, I NEED MY MUSCLE RELAXER MY SURGON ORDERED, NOT AN ANTI-ANXIETY. A blank look. Ok, let me check. She said dilauded about fifty times in confusion as to what muscle relaxer I needed, again WRONG medication CLASS. She asked do you know what you took? I said “Don’t you have that in the chart?” I mean I hate to be rude, but really. I am in ICU, INTENSIVE CARE, and you are not knowledgeable enough to check the chart and see what my Doctor had prescribed or what pain medicines I received before in PACU that worked. I JUST HAD BRAIN SURGERY. I began crying and paging the front to please send in Brittany. I explained to Brittany what I needed and she took care of it right away. I was given morphine (which I had a mild reaction to top bottom right photo of burning and inflammation [they dosed me with benadryl and boom out like a light], but who cares, it was well worth it and I hid it from the neuroward staff every time, in fear they would say I couldn’t have anymore) and I fell asleep and was woken up around 2am for a CT scan. I was in and out the whole night so I don’t even recall waking up from the CT scan. I recall them taking me back to my room and telling me my scan looked good and that I just had air built up behind my incision. I drifted off to sleep and awoke to a new nurse, Kevin. Kevin was so awesome. I told him about the difficulties I had the night before and he got the nursing manager to take down my comments and concerns. Kevin took out my arterial line, catheter, extra I.V., and got me walking with the help of a wonderful physical therapist. He even hooked me up with delicious hot chocolate and told me I am one of the few patients who admit the like the hot cocoa. I loved it and drank probably four cups in the morning’s span!

After I was up and walking, they determined I was functioning properly and I was moved to the neuroward on the same floor, but down the hall. I spent two more nights in the regular hospital recovering. I could not get my pain management under control for quite awhile and was nauseated the first two days, vomiting my meals up, soon after consumption. My boyfriend stayed with me in the hospital every night, insuring I had the proper treatment throughout the night and to provide company, of course. He laid in the bed with me as we watched movies together, a.k.a he watched and I fell asleep about ten-twenty minutes later. My baby helped me through so much. Anytime I needed to go to the bathroom he was there helping me to the toilet. My mother also helped me enormously in the hospital and took me for outings to the lobby to see the Christmas tree and lights and the gift shop. I would either fall asleep or get nauseated and we would return about ten minutes later to my room. She ensured I had a meal three times a day, despite my lack of interest, and called the nurse when I needed pain medicine. She showered me and walked me around with my walker several times. My dad and Aunt Cindy only were there the first day in ICU and said goodbye once I made it to the main ward. I was happy that they both came out to make sure I was well taken care of and made it through my surgery. My dad later returned to drive me from the hospital.

After I left the hospital we stayed at a hotel for one day to make sure that I was  out of trouble. I had continued problems: several fits of vomiting and a hard time with pain management. I later found out that this surgery (brain surgery) is one of the most painful recoveries out of almost all surgeries. My mom brought me Starbucks Frappucinos, the un-caffeinated Vanilla Bean, to keep me happy and we even had Chinese food delivered to our room! My mom was so thoughtful to provide all these arrangements for my boyfriend and I.

I now have been home since last Sunday, almost a week, and my mother has taken care of me. Through my tears and pain she has been by my side. I gave my boyfriend some “time off” to catch up on sleep, but he visits me daily. I slept over at my house one night and my “ambien hallucinations” were too much for him to handle so I decided to stay with my mother until Monday. I am getting stronger a bit more each day and going longer without my pain medication and muscle relaxers, but it has been extremely hard. I luckily have not had an infection or any severe problems yet. I have noticed a few sensations that worried me, but I’m giving it time until I see Dr. Parrish in January. I had half of my staples removed yesterday thanks to my boyfriend (one had to be removed on Wednesday because it was literally pinching me and burning). I will have the rest removed (again by my boyfriend who learned via youtube and thanks to Dr. Parrish’s (have to go on vacation) staple remover kit) on this upcoming Wednesday, which will mark a full two weeks! The pain is still there, though, and I can’t believe it’s been less than two weeks. I have been using ice packs and heat pads on my neck and leg and have been relying heavily on my mother to help me. I am, however, feeling better. My pain in my back is finally relieved, my hands and feet have feeling to them, and my spirits are uplifted. I hope to be closer to God and that I can heal through this, work out my other disorders and be tested, and that I can become healthier and happier.

With much love,

Cass

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Three Days.

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.

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.

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.

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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 


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