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)

Neurologist.

I finally saw the neurologist today. It was a relief to finally be seen by a doctor who specializes in the field of neurology, which I so desperately needed to see. Dr. P was great. I explained all my symptoms to her and she assured me we would get to the bottom of this. She ordered and MRI to be preformed next week on my head, neck, and spine. I also had blood work to make sure that I don’t have any vitamin deficiencies. I am anxious to have this test done as soon as possible because it is so entirely hard to wait for answers. Until then I have three tests and a lot of busy work. Everything is out of my hands so I just must keep going until I know anything.

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