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.

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