Originality

Some of my past readers may have noticed that I “revamped” my blog and change a few thing around, but that doesn’t change the fact that this my personal blog and I use it to talk about my struggles with severe depression and anxiety, my Chiari Malformation diagnosis. I think most people are terrified that they are alone and so if this can give my readers a sense of unification or understanding, then my job is done.

So many things have occurred since I last chimed in. First of all, I have a “new” position at the same job as a dog bather. I basically wash and deshed (which is a number of hair removing techniques),  brush teeth, clean ears, brush out, remove mats, and give pawdicures to lovely (mostly, although some are plain assholes) little and HUGE doggies. I like this position better because I don’t have to put as much stress on my neck and back as I did as a playroom attendant. I also feel like my job does have purpose. I got to make an adoptee Dalmatian mix all pretty in hopes of getting adopted and a freshly adopted Chow mix a deshed and brush after being severely neglected. My shift hours are also amazing for my chronic pain. I work 10 am – 3:30/4pm, which gives me enough time to sleep in and prepare myself for the shift and also allows me to have time to relax and unwind when I get home. I usually come home and lay on my heat pad for a couple hours. I work Monday-Friday, which is great, as well, because I get the weekend off to spend with my mom, but also having a schedule is good for my depression and anxiety.

I have slacked off a bit in Mav’s training, but we have come LEAPS and BOUNDS since my last post. I had a severe major depression episode and was completely upset after having some really hard personal news hit. I was shaking and wishing that I was not here. I finally let Mavis out and she immediately came over and laid on my upper arm by my face and just stayed still. I didn’t teach this to her at all, but she knew that her mom needed her help. She did so amazing and I felt like all my training had been justified. I also took her with me to a psychologist appointment and she did wonderful! She remembered her blanket commands and sat on her blanket and ignored the door opening! She had little slip ups in the hour long appointment: barking at a plant, falling asleep, and being a little restless. She tooted and snored in the room and my therapist couldn’t help but laugh.

I’ve been trying to cope recently with my chronic pain and anxiety. Today was very difficult in terms of pain. The back of my head had a weird pressure feeling right where my cerebral tonsils are (where my surgical incision is). I also had bad neck and back pain and weird muscle cramping. I thought about asking to go home early, but stuck it out. I got home and used my heat pad for about two hours straight. Tomorrow I am heading to Lubbock for my cousin’s wedding and will be taking my best little pug with me. She won’t be going to the actual wedding because she isn’t that ready to be in public. I get very anxious around event like these. A lot of people make me extremely anxious and then also being judged around family is a worrisome of mine. Hopefully all goes well.

Thanks for staying with us!

xo,

Cass & Mav

Relentless Pain.

I haven’t been feeling well. Part of me struggles with trying to pretend things are okay and that I’m fine, but my back and neck pain are now becoming daily reminders again of the war raging inside my body. After my decompression surgery the back pain receded for a while, but it has come back with a vengeance, as I am going on the second week with continuous pain. On top of that, my knee was dislocated this past Saturday at work (two dogs playing rammed into it from the side). The normal individual with no past history of dislocations would have been just fine, but Cassandra. Odd, abnormal Cassandra. Her knee and ligaments remembered the past and dislocated. The knee is fine now. Practically back to normal, as I used to suffer from frequent kneecap and hip dislocations, I “bounce” back quicker, but now my hips are aching, too. I do think that Ehlers-Danlos Syndrome is a likely culprit. I’ve not been diagnosed with it, but I’ve have joint pains, unusual hyper-flexibility, and dislocations for several years. It’s one of those things. I can only be diagnosed with one thing at a time and it’s a long process. Why are diagnoses so important to us, anyways? Maybe it provides us a label for our pain? Perhaps it make our pain “more” real?  Will others accept that we actually do have a condition and are in pain because we are now labeled? I don’t know the answer. I think for me, personally, it’s just knowing there is a reason: it’s not just a medical mystery or the unwarranted “it’s-all-in-her-head” look.

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I went to see my primary doctor today to report my issues (again). I was prescribed some pain medication and advised to see my neurosurgeon again. I’ve been in bed most of the day with a headache and pains. Praying that tomorrow I’ll wake up refreshed for the day.

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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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

 

 

 

 

Hopeless

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

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

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

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

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

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

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

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

It’s funny how everything turns out like this.

xo,

Cass.

Diagnosis

I got my MRI results on October 2, 2015 at 3:20 am.

My diagnosis: I have a congenital defect called Chiari Malformation Type I, my cerebral spinal fluid outflow is being blocked by my cerebellar tonsils protruding through my foramen magnum. So in other words , my skull is too small for my brain. (That’s where my smarts come from!) This is a rare disease and effects 1 in 1000. This is what is causing the pain and tingling in my arms and legs. Everything has finally matched up and I am relieved to have an answer finally. So what does this mean?

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I have to undergo decompression surgery to allow the CSF to circulate like it’s suppose to, a type of brain surgery. It luckily isn’t too invasive as they will only have to remove the bone at the back of the skull and spine. The dura overlying the tonsils will be opened and a patch will be sewn to expand the space.The goal is to relieve compression of the brainstem and spinal cord, and to restore the normal flow of cerebrospinal fluid.

The surgery will take 2-3 hours and I will be in the hospital for 2-4 days for recovery.

I do not yet have a scheduled date as I need to meet with my neurologist and my neurosurgeon.

Purple is the color to support Chiari Malformation Awareness, so I’ve changed my profile images to purple to raise awareness about this rare disease.

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If you have the ability please share or purchase one of these shirts I designed to share awareness about Chiari Malformation and to support me in my recovery, it would be much appreciated.

https://www.bonfirefunds.com/cassandras-chiari

Much Love,

Cass

Rigidity

This morning I woke up feeling physically drained, despite having slept eight hours, and my head feeling as it were in a fog. Both of my feet, legs, and arms ached with stiffness. My feet in particular were numb on the bottom and tingling around the edges. I tried to massage them to relieve the pain as an older arthritic person would. I flexed and relaxed my knees trying to “wake them up.” I attempted to walk across the room to draw a hot tub in hopes of regaining sensation in my feet and stop the tingling, but it felt like I couldn’t move them. I dragged my legs as best I could until I made it to the bathroom. I got a glass of water and food to see if maybe I was just dehydrated or hungry, but to no avail. I sat in the bathtub as my boyfriend began rubbing my neck and back jolting with electric-like pains. As much as I wanted to cry, I had no tears left as I’ve cried myself to sleep practically every night.

Over the past months I have been experiencing an array of symptoms that have left me downright puzzled and hopeless. I know something is wrong; my intuition tells me so. I have an upcoming appointment with a neurologist on the 21st of September, where hopefully I might gain some insight as to what is going on with my health.I have had chronic pain in my back, neck, and legs especially. In addition to the constant pain, I have had issues with my balance and muscle weakness. I fell last night (shocked by the loss of coordination) and have been jolted off balance daily. I know I am clumsy, but not to the point where every time I stand up, the room is spinning and I start to loose my coordination. I only felt improvement when I began to start moving; forcing myself to drag my feet around.

My most noticeable symptoms, to others at least, is my uncontrollable hand tremors. I have tried testing my blood sugar, thinking I just need to eat. I have gone without caffeine wondering if I just was sensitive. I cannot hold my hands still anymore and it’s beyond frustrating, especially when I am majoring in the field of Biology. I have to keep my hands as still as possible to collect samples through pipetters and sterilely transfer them or make a four quadrant bacterial isolation agar. I have had fellow student make comments that I look like I have Parkinson’s and mimic my motions, not intending to be hurtful, but it did as I have the sensitivity of a hormonal teenager going through puberty.

My cognition problem are even more frustrating as I am constantly saying the wrong word for what I’m thinking. This is not just an occasional slip up… I can’t put my thoughts together when answering and speaking, yet I can perfectly comprehend what others are saying and write/type with ease exactly what I am communicating. I have been having migraines and headaches behind my eyes and the back of my head. My words are beginning to slur together at times and I am putting excessive pauses between my phrases. My emotions have been completely out of control as well, worse than usual. I cry at the drop of the pen and am anxious and depressed most days.

I wanted to start blogging in attempts to jot down my worries, Perhaps my mind will become unclouded and I will be able sleep more soundly. Whatever is ahead for me, I want to document it: a record journal in order to process my pain.

I have theories as to what is going on, but I know that it is not good to worry, so I have put my faith in God that whatever happens, happens and it is out of my control