Insomnia and Pain
Life as of Right Now
I have been having such a hard time with pain, migraines, and insomnia. Every night I either can’t get to sleep or wake up in the middle of the night and can’t get back to sleep. I’ve counted and I take roughly Twenty pills a day. Twenty!! Between my muscle relaxer for my back, my anti-anxieties to sleep, my need for tylenol, and my daily vitamins and meds. I now have an infection of my mastoid, which absolutely is painful. It’s finally stopped throbbing after three days of heat compression and antibiotics. My neck and back aches constantly from the Chiari and I really just want to lie in bed all day. I am struggling to stay positive, but I know that I am a strong individual and that I CAN do this. I miss my not having my dad and mom by my side every step of the way, but I’m growing up and this is one challenge that I’ve been given to tackle. I will continue to fight and stay motivated, it’s the only thing I can do right now.
My referral to the neurosurgeon has been approved and put in and they will be contacting me next week. I can’t wait to finally have a plan for things.
I can’t tell you all enough how much it means to me to have a support system in place. 15 shirts is incredible so far. I’m very appreciative of everyone’s love and willingness to help.
Above is the link for the Facebook event to buy the shirts; Please invite your friends and family and share.
About Cassandra
In case I have individuals who don’t know me personally reading my blog, I decided I would introduce myself and talk a bit about my passions. First of all, I’m a full time student at Texas Tech University and majoring in Biology with a minor in Chemistry. Yay science. I used to hate science in high school, but I absolutely love it now that I’m in the real world. My favorite subject is microbiology.
I also work part-time at a wonderful little vet clinic as a vet assistant. Animals are my absolute favorite. There is nothing more satisfying knowing that I helped an animal and made a difference in their care. I am seriously thinking of becoming a veterinarian for dogs, cats, and small animals. I used to watch Animal Planet 24/7 and Steve Irwin was my idol. They have a permanent place in my heart. I love style, yet I usually dress super casual in a sort of I-don’t-care-what-anyone-thinks way, but there are occasions where I show my sense of fashion. I’m addicted to pinterest! Who isn’t these days? I actually have a board for my chiari malformation. I think it was one of my ways to cope when I found out. Pugs are my favorite animals and when I graduate, I will adopt one! I live with my boyfriend of 14 months and his brother in a cozy duplex with our Pomeranian, Eli, and our Tabby, Oliver. My mother lives right across the street so I get to see my other babies often too: Tasha and Ginger, the sweetest Chihuahuas with loads of personality. I have the most amazing parents and am so lucky to be close to both of them. My dad lives in Livingston on the lake with our Doberman, Max. He’s a nurse and served in the military for twenty+ years. My mother is my best friend and is the sweetest and most bubbly person you will ever meet.
I have one brother, Rhett, and sister-in-law, Jackie, the parents to my two little nieces: Emelia is almost three and a new little girl is due in January. I also have another “sister” that I’ve bonded with so closely since we were sixteen. Dianne is my other half and keeps me sane. I am so lucky to have the amazing family I do. I love my Grandparents, Aunts, and Uncles very much and my boyfriend’s family are wonderful too!
My favorite things include: science, horror films, kewpies, netflix binging (right now we’re watching Sons of Anarchy), hedgehogs, crafting (sewing, knitting, crocheting, etc.), Lily Allen music, hiking, Halloween, tattoos, decorating, vans, aliens, unicorns, stop-animation films, pugs, of course, fashion, decor, the paranormal, nature’s beautiful places, action movies, online shopping, and uncrustables.
Things I want to do: be more physically active (get in shape), visit New Zealand and Thailand, start cooking, beat this fight.
Thanks to all!
xo
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?
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.
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
The MRI and Pain
Last Tuesday I had my MRI. I still have no results as of yet. The whole process was completely fine for me because I took two of my anti-anxiety medications which knocked me out for the entire process. There was one period where they woke me up and said I was jerking too much in my sleep and had to reshoot for 10 minutes. They added contrast in, which I vaguely remember. The process took about an hour and thirty minutes. The machine was loud and their is something that goes over my face, which made me even more glad to have taken my anti anxiety meds as I am a bit claustrophobic. I am hoping that I should get the results by today or tomorrow.
Last night during and after my night class I had severe back and neck pain and muscle pain in my thighs and arms. The pain was an 8/10 and brought me to tears. I contemplating going to the emergency room, but I remembered that I had my MRI already and that there is really nothing they can do except give me pain medications and perhaps a spinal tap, if that. I took some pain medication to help ease the pain and laid on the flat ground trying to relax. This morning when I woke up the same pain continued to linger in my lower back. I called to make an appointment with a Physician’s assistant, as that is all my provider had available and am hoping for some pain medication (I finished my very last dose of pain meds from my surgery back in 2013) and hopefully a rush on the MRI results. My lower back is so painful. I am trying to stay still and relax on the couch until my 1 o’clock appointment. I am beginning to wonder if I’ll ever get relief.
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.
Must Love Pugs 