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.