EDS Awareness Month

🦓 I am joining the EDS Awareness Month Challenge – May 2020.


Day 01: Meet Me! – I am Cass! I’m 27 years young, a mama to an 1.5 year old son, Griffin, and a wife (& best friend) to @calebrobnson. I live in Austin, Texas and work in a laboratory as a clinical research assistant and have spent the past month working with microbes to test the efficacy of preservatives in cosmetic products. I graduated in 2017 from Texas Tech with a degree in biology. (Wreck’ Em). My favorite past time is Netflix and Paint. I love doing custom work to create artwork for nurseries. I am a pug and sphynx mama and my fur (& furless) children bring me so much joy. My husband and I go hard at Modern Warfare (gamer tag: motherpuggy) – we play on the weekends and evening when I have energy. My favorite things besides my babies, are Diet Coke, pad thai, sour candy, burritos, tiny houses, modern interior design, tattoos, Harry Potter (and all other geeky series) and scary movies. I have Ehler’s Danlos Syndrome along with comorbidities of Chiari Malformation (brain surgery in 2015), Mast Cell Activation Disorder, and Undiagnosed GI & autonomic issues. I live with chronic debilitating pain in my neck, back, and knees and suffer from frequent dislocations. Despite my conditions and prognosis, I still have a fighting spirit and aim at being the best mom I can be. đź’„


Some fun facts about me: I’ve lost about one-hundred pounds since 2013, my husband and I met and got married within two months of knowing each other, & I grew up as a military brat and lived in several different places including Cuba!

pain.

I have a hard time explaining to people that I will not get better. This is only going to get progressively worse, if anything, and I am in pain everyday. Most of the students I go to school with only worry about making it to Friday, so they can party on the weekend. They complain about having to study, while here I am not sure if I am going to make it through class because the pain is too bad. I write this from my couch, heat pad on high on my back, neck brace on with my Real Time Pain Relief MAXX ointment lathered on my neck and back praying that this pain will pass quickly. I am on methocarbamol, a muscle relaxer, and am trying my best to only take one tramadol a day. I have lidocaine patches that I wear 12 hours on (although they don’t ever stay on that long!), 12 hours off on my lower back. I take tylenol and advil daily in addition to these other medications to try to alleviate anything. The pain is the worse thing having to deal with, but I also have weekly allergic reactions. Last Wednesday I had a horrible reaction that left me wheezing, covered in red splotches, and horrible gastrointestinal discomfort. I try my best to push forward and to see the best, which I have so much to be thankful for, but sometimes it’s hard to stay focused. I also suffer with depression and anxiety. The brain’s way of processing pain is similar to depression, so it definitely can have an impact on my mental health. I have had to take a year off in total from college to deal with this and it’s something I’ll have to fight everyday for the rest of my life. I am so incredibly blessed to have a partner willing to stick it out with me and be not only my best friend and husband, but my caretaker too for days that I can’t get by or nights that I come home with tears.

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I want to create a safe place for people suffering, not only with chronic illnesses, but with mental health as well. We are in this together. Please feel free to comment if you need help or want to discuss your challenges.

Xo,

Cass

Chiari Malformation Month (September)

Hey guys!

So this is delayed because I had a difficult time working iMovie, youtube, and all the ins and outs of the technological platform, but I finally finished my Chiari Malformation Awareness video for September (Chiari Malformation Awareness Month)! In this video I discuss how I came about my diagnosis and the challenges I continue to face living with this invisible illness. If you have any questions, please do NOT hesitate to ask!

XO,

Cass

Yes!

Well I’ve been a busy busy busy bee! First of all I started back to school and that has occupied all my free time. I’m taking five classes for my last fall semester in college: Organic Chemistry, Exercise Physiology, Biology Seminar, Pathophysiology, and Abnormal Psychology. So far I’m doing relatively well for such a full load, but chemistry will always be my down fall. I have to focus and buckle down to get ahead. 


Other news, I got engaged! The man of my dreams got down on one knee on October 7th and I say yes without hesitation. Caleb is my best friend and my soulmate. I knew pretty quickly that he was the one for me. If you haven’t found your significant other yet, let me tell you, love at first sight is possible because it happened for us. I can’t write enough to explain my absolute admiration for this man. His soul, his humor, his smile, his eyes, his everything… I love it. He’s the reason I wake up with a smile and go to bed with sweet dreams. Having a long distance relationship is difficult, but it has been well worth it and I will be moving mid October to join his side.


 I’m so entirely excited for our upcoming plans: house decorating, furniture shopping, wedding plans! I’m ready to spend the rest of my life with him! Caleb, Mavis, and Oliver, my little family is perfect! I’ve never been so happy in my life. That explains my absence! My goals are to survive this semester and prep for my last one in the spring, plan an amazing wedding with my fiancĂ©, get in shape with my honey for our big day, get married to Caleb in front of God, my family, and friends, and graduate with my bachelors in Biology and a minor health professions. 


As far as my spoonie situation, things have gotten worse. I had a pain management appointment back in late August where I received six large injections in my back with the hopes of relieving my pain. I was numb with a pinching for less than 24 hours. My back has been excruciating. I went to the doctors and almost passed out in the clinic from the severe pain. I received a renewal on my pain medication (luckily, because I was petrified I would not get refill), a muscle relaxer prescription, and a shot of toridol. My mother had to pick me up and I slept as soon as I got home for a solid two or three hours until Mavis demanded my attention. I’m becoming less hopeful about my situation with my back, but hopefully I’ll be receiving better medical care here in the near future. I’m constantly praying that my back will become manageable and that I can live without being dependent on pain meds. Thank you to all that continue to follow my difficult but lovely journey. To all my spoonies, don’t give up. You do have a purpose; if I have one (I want to be a great wife), you surely do too. 

Xo,

Cass

Follow me on snapchat (@cassandrasheab), Pinterest (@cassrobnson), instagram (@cassrobnson) for more of Caleb’s, Cass’s, and Mavis’s adventures!

Vida

 Rollercoaster. That’s what my life has become. So many ups and downs. I had an amazing trip to Galveston. I stayed with my best friend, Dianne for a glorious week by the beach! The water was amazing and the weather, so pleasant! I took Mavis along with me and she got to enjoy her very first beach list and could not get enough. She officially loves sand: eating it, tossing it, and covering her bitty body with it! She also is a professional seashell collector and bird chaser. Galveston is such a dog friendly area and I was imagining my future along the coast with my curly-tailed babe. I collected so many sea shells and enjoyed hours at a time on the shore.

Along with the much needed and wonderful getaway, I started talking to a certain someone. At first it was friendly hellos and cute little questionnaires. What started as an interesting chat became so much more. I have found my soulmate. I know this seems sudden and completely out of the blue, but I think when you know, you know and well, I know, at least I’m fairly certain. This man treats me so incredibly and accepts me for all that I am. I’m not an easy package and I know this. How do I say, “Hey, I have a chronic illness and bunch of issues, and I’m sorry, but this is who I am”, and expect another to say “okay, I want you regardless.” Not an easy task to take on and it makes opening up hard, but I did and to my surprise, I was accepted. Chivalry is not dead, I know this to be true now. Caleb treats me with the upmost respect and I feel at peace around him. I think we just connected right away and we have so much in common. I think all my praying and hoping has finally paid off. I’m passionate about our relationship. I think it’s easy to say that this is the one for me. C is already my best friend and I’m not one that easily trusts others, but yet, it’s so natural for me to trust him.

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With joy comes pain. My pain has been unbearable lately. The past three days I have basically been bed ridden with severe back pain, debating whether or not to make he emergency room trip. I constantly worry that this is what my life will become: Days at a time suffering. Tomorrow I have a pain clinic appointment to hopefully get this under control. I also got news that I cannot be genetically tested through my health network because they don’t do that type of testing. I basically have to research on my own to get my diagnoses, but I just don’t have the energy or time right now and it’s just a label, isn’t it? If this pain doesn’t subside, I don’t know what I’ll do. I need tomorrow to come so I can see if this pain relief will come.

In other bad news, my finances are quickly diminishing. My parents are divorcing and so their finances are suffering too. I don’t have enough money for classes or even enough to live on hardly. I’m so stressed. I don’t know if I will be able to graduate this May after all, if I don’t have enough money for it. I wish I could change so many things, so many stupid decisions. I have blown through my money. I’m the typical dumb young person. I thought I was ahead by having a savings account, but that can only go so far. I finally was able to make a payment while awaiting my loan to go through, thanks to my dad

One last thing! I’m hosting a fundraiser to help support my living and medical bills. Bravelets are wonderful little bracelets in all different styles that say ‘brave’ to support a cause. They come in a number of different colors, but the featured are some of my favorites: glacier blue, pink, and silver. I hope you love them as much as I do!

Xo,

Cass & Mav

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

Chronic Pain Confessions

If you haven’t visited Amanda’s blog: Everything Hurts, you definitely should. Her latest post has to do with her confessions dealing with chronic pain. I decided to follow suit using her amazing crafted and perfect icons to lead the way.

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I have struggled most of my life with emotional pain, but I didn’t have to deal with constant physical pain until I began showing symptoms of Chiari. I try my absolute best to pretend I’m completely healthy and put together, but I am fighting every day. Today I had severe back pain. I was at work doing my best to make sure it wasn’t noticible that I was in pain. I kept counting down the hours until I got off. Every time I bent down (when working with dogs, that is very often) I felt a jolt down my back. When standing, I felt a constant almost “buzzing” pain that feels like when you sit on your foot too long and it falls asleep, but you continue trying to walk on it mixed with a Charlie horse cramp. I finally closed the playroom down and put all the dogs in their crates for nap time. I looked at the clock, so eager to head out, but I had an hour left. I was assigned to take the grooming dogs out to potty. Every time I made it outside, I leaned against the wall crouched down with deep breathing (like a pregnant lady in labor), while the pups did their business.

I hide my pain. I don’t like telling my parents because I’m afraid they’ll discredit it. They have supported me through everything, but they also think that this surgery is an instant cure all solution and I am afraid to disappoint them.

I’m tired of saying I don’t feel well or my neck is killing me and then having to hear the “maybe it’s the insert some common bug/virus” or “muscle strains suck.”

I’m tired of feeling depressed. I try my best to do the right thing for my mental health, but I get anxious about how others perceive me. Do they think I look fat? Do they think I’m dressed sloppily? Do I look happy?  I have a chemical imbalance and no medication I have taken has made things bearable for a continued period. Getting more exercise, eating gluten free, or trying said homeopathic solution isn’t going to work for me (that’s not to say it won’t work for others).

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I have a very physical job. I am constantly moving. I feel like it is enough for me, but I want to do more. I want to be that fit BBG girl that looks super cute and they love to work out (or make it look like that) and that it’s super easy. Or that cool yoga chick that has trendy workout gear they actually work out and not just to lounge in.

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I’ve had five surgeries since birth, but all my scars are hidden and people can’t see the pain I have had to endure. Every single day is different. Some days I miraculously don’t have any physical pain. Then there are days which I call “spoon days,” like today, where I wake up in pain. My back jolts, my neck aches, my muscles hurt, and no I didn’t exercise the day before. Most days are in between these two. I’m excited to have Mavis trained as a service dog, but am nervous about how people will perceive me. Will they think I am a sham trying to pass off a cute pooch as a service dog just so I can take her into places? (Hello anxiety, dear old demon).

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I always have used food as a coping mechanism, which is why I was so overweight (obese, actually) as a child and in my teens. It will most likely always be a love/hate relationship because now I have IBS (although not confirmed and I don’t think it is, I think it’s just MCAD) and MCAD to deal with, which makes foods scary for me. Foods that I have never had a reaction too, suddenly make my mast cells react for no reason. I can eat that same food and have nothing wrong the next time. I have “plumbing” issues and often get sick from eating different foods. Yet, I have my junk food weaknesses, like most people do. (SourPunch Straws and Sonic are my guilty pleasures) Why do I feel Diet Coke is a necessity (I cannot have high sugar amounts because I get deathly ill, no I don’t know why, but 30g of sugar is my limit, so Diet is the only soda I can have, yes I know the “real” soda might as well be better, but soda is bad regardless, and here I go again, thinking too much of what other people think about my habits)?

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This post wasn’t an easy one to write, but I’m glad I did. Working towards self love and a happy or manageable lifestyle.

If anybody who reads this has good tips on managing anxiety, let me know. I’m willing to try anything: like blogging for example, getting my thoughts out via the world wide web. Only a handful of people will most likely read this and I’m good with that.

xo,

Cass

(image and icons from Amanda Vinci, everythinghurts.me)

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)

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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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